Live Life Then Give Life

Tor's Plea

2011-07-09T15:27:00.002+01:00

“Every day is a struggle and it gets harder just to survive each day. Statistically I shouldn’t even be alive now. Everyday I face the possibility my chance at life may never come and am constantly scared about my uncertain future. At 24 I shouldn’t have to worry about living to 25.”

Our ambassador Tor has now been waiting for a lung transplant for exactly 4 years today. She was only given 2 years left to live when listed, so she is well and truly on borrowed time.

You may remember we launched Tors Christmas wish in December 2010.

7 months on and nothing has changed, Tor is still waiting, still holding on, still fighting to live, hoping for that phone call that will change her life. Tor lives with the knowledge that half the people waiting for a lung transplant will die.

During this week, National Transplant Week, we have joined together with NHSBT to spread Tor's plea in the hope that more people sign the organ donor register and give Tor a chance.

Please pass this link on to as many people as possible http://www.lltgl.org.uk/torsplea

Tor says “Without a transplant there is no hope for me. Please watch my plea and pass it on to spread the message far and wide. You can do something today and save lives of people waiting each day for their lives to start.”

Inspired? Click here to sign the organ donor register today!

Thank you.

To keep up to date with Tors story visit her blog here: http://tor-pastthepointofnoreturn.blogspot.com/

Guest blog by Oli Lewington

2011-06-23T08:04:00.005+01:00

Today on the LLTGL blog we're delighted to have Oli Lewington's guest post on the current 4Thought.tv series on compulsory organ donation. Thanks to Oli for his views, we'd love to hear what you think.

The 4Thought Question: Should Organ Donation Be Compulsory?

This week, Channel 4’s 4Thought.tv strand has be focusing on the question of whether or not organ donation should be compulsory.

We’ve heard from Professor John Harris, who believes not only should it, but also that live donors should be “incentivised” to provide their organs (for example, with cash payments); from Derek House, a Jehovah’s Witness who believes that organ donation is fundamentally wrong and shouldn’t be allowed at all; and Colin Prior, who advocates presumed consent (the system that would make people opt-out rather than opt-in to being an organ donor) after losing his 2-year-old son while he waited for a heart transplant.

Tonight, you will hear my views - or as much as can be edited into 90 seconds. For the record, here are the salient points I tried to put across (we’ll have to see how much of it came across in the end!).

GIFT OF LIFE

Firstly – and most forcefully from my perspective and that of many of the lucky recipients of transplant – is the emotional power of the knowledge that you’ve been given the gift of live, with the emphasis on ‘gift’.

I don’t know how it would feel my life wasn’t saved by a conscious choice, but rather the simple fact that my donor never opted out of the system.

FAMILY REFUSAL

Presumed consent removes the need for anyone who supports organ donation to talk to their families about their wishes. When faced with a coordinator asking you whether or not your loved ones organs can be used, how can you be sure of their wishes if you never spoke to them about it? What if you say yes, but they didn’t want that and just never got around to taking themselves of the register, to opting out?

No family in the world in that kind of pressure situation highlighted and exacerbated by grief, pain and loss will agree to donation if there is still doubt. Better to raise awareness as we are and encourage sign-up to the ODR than to risk losing organs because no one talks about it any more.

COLD, HARD FACTS

The Organ Donor Taskforce Report from November 2008 makes two key, fascinating and sobering, points:

Firstly, a switch of system would require an investment of £40million in a campaign to make sure everyone in the country new what was happening. And it does have to be everyone. No falling-through-the-cracks like the digital switchover or similar mass-market campaigns. We all have to know what will happen to our organs if we don’t opt-out.

Secondly, infrastructure: the NHS as it stands simply could not cope with the significant rise in the number of potential donors that a switch to presumed consent would bring. Sad, but true.

So surely the £40million would be better spent on awareness of the Organ Donor Register (ODR) and incremental improvement of the intensive care services, number of donor and transplant coordinators and numbers of surgical teams?

THE FINAL WORD FROM SPAIN

The Spanish organ donation and transplant system is held up - quite rightly - to be the best in the world. The numbers don’t lie.

But too many people draw incorrect conclusions from the fact that Spain has an opt-out system. Mathematicians will tell you there is a vast difference between correlation and causation.

Dr Raphael Matesanz, the pioneer held up as being chiefly responsible for the success of the Spanish system says himself:

"Many countries try to increase organ donation through legislation. But a change to presumed consent doesn't improve the donation rate".

That 3 people die every day waiting for an organ is unacceptable.

That I’ve been to the funerals of 5 friends under the age of 24 due to lack of organs is indescribably, unimaginably tragic.

That I was lucky enough to receive a transplant meaning that someone else waiting didn’t get theirs is hard to live with.

But there is more to this argument than simply increasing the size of the potential donor pool. We must see the bigger picture and continue to support the work of organisations like Live Life Then Give Life to sign as many people as possible to the organ donor register.

Oli Lewington is a friend and former founding Trustee of LLTGL. He is a writer, blogger, digital creative and social media specialist, working from his home base in a village near Northampton. In 2007 he received a life-saving double-lung transplant and never a day goes by that he doesn’t think about and thank his donor and their family for their courageous decision at the worst of times. Follow him on Twitter here.

Kirstie's big day.

2011-06-17T07:09:00.017+01:00

21 year old Kirstie Mills is one of our incredible LLTGL Ambassadors.

She is in desperate need of a double lung transplant and declining rapidly. Doctors told her last month that she has approximately six months left to live without one.

Yesterday, talk of drugs, hospitals and mortality was put aside as Kirstie walked down the Aisle to marry her fiancé Stu. Despite being extremely ill and leaving her hospital bed in the High Dependancy Unit for the day, Kirstie looked radiant and it sounds like the day was very magical indeed.

We need your help, because without a transplant, Kirstie and Stu will not get to celebrate their first wedding anniversary. There are 10,000 people like Kirstie currently in desperate need of a transplant, and three of those die every single day due to the shortage of donors.

What can you do to help?

Please share the video of Kirstie's wedding day with anyone and everyone; it is truly moving.

When you do so, please encourage people to sign the organ donor register. It takes just 2 minutes, anyone of any age can sign up, and you could save up to 7 people like Kirstie once you're gone.

It's so quick and easy to sign the organ donor register, yet only 28% of the population have taken the time to do so. All the major UK religions support organ donation, and most illnesses do not prevent you from becoming a donor. There is more information on our FAQs page.

Please go to www.tinyurl.com/kirstieslungs to sign up, and tell your family about your decision to do so. Then share the link with everyone you know. The majority of us just haven't got round to signing up; let's do something about that.

Kirstie knows that she doesn't have long left without a transplant, but we can help give her hope, give her a future.

Please help Kirstie spread the word, by sharing her story. Together we can ensure even more people are given a future thanks to the gift of life.

Thank you x

LAM Awareness Day.

2011-06-01T09:02:00.003+01:00

Today is Worldwide LAM awareness day.

LAM stands for Lymphangioleiomyomatosis, and is an extremely rare disease which only affects women, and usually shows itself in women of child-bearing age.

LAM primarily attacks the lungs, destroying lung tissue and leaving sufferers increasingly more breathless. The disease causes excessive growth of smooth muscle, which progressively invades the airways, and destroys healthy tissue, preventing the lungs from providing oxygen, eroding lung function, and making breathing a daily battle.

A common symptom of LAM is pneumathoraces, or collapsed lungs, and it is often when the patient reaches this stage that the disease is diagnosed. LAM is not an inherited disease and the cause is currently unknown. There is currently no cure for LAM and very little treatment, besides a lung transplant, for severe cases.

This is an extract from a piece written by LAM patient Gill Hollis, in 2010:

My lung problems began in 1987, when I was in my early twenties. I’d always been fit and healthy, so it was a shock when I suffered three lung collapses in six weeks. Five years later, after some more lung problems, I was told I had the chronic disease LAM. Oestrogen is thought to play a part in LAM, so I was advised not to have children. I was told that my prognosis was uncertain, but that there was no treatment and no cure. It was a devastating diagnosis.

The disease progressed through slow attrition; I grew increasingly breathless, and required more surgery after further lung collapses. It was in 1995, before another operation, that the possibility of a transplant was first raised with me. This was fantastic news; finally, I was given some hope that my future might hold something other than the ultimately terminal march of the disease.

In the meantime, I was being forced to give up my favourite activities one by one. By summer 2003, I was on oxygen 24 hours a day; eating and sleeping were difficult; and showering and dressing in the morning took hours. I’m naturally an energetic and sociable person, but was unable to be either.

I was finally put on the transplant list in July 2003. By then, my physical symptoms were at least matched by the psychological impact of my situation; I was deteriorating rapidly, and was terrified that my call would not come in time.

I was lucky. In February 2004, I received a new left lung. In general, the operation went well and thanks to my donor, her family, the team at the Freeman Hospital and the support of my family and friends, my life since then has been absolutely transformed. Leaving hospital was extremely emotional – I felt like a new woman.

Of course, there have been setbacks, but the benefits have far outweighed these problems. My quality of life is excellent. It is wonderful to live a normal life again: going out for supper with friends, working, walking to the cinema, going on holiday, playing with my young nephews. I even appreciate being able to do my own supermarket shopping!

I am able to indulge my love of sport again too; since my transplant I’ve been kayaking, skiing and golfing, and have even learnt to rollerblade. Earlier this year, my husband and I travelled to New Zealand, where we completed the arduous one-day trek, the Tongariro Crossing. In summary, I am a participant again, rather than a frustrated spectator.

Soon I will celebrate the seventh anniversary of my transplant. I wrote to my donor family soon after my transplant; it was the most difficult letter I’ve ever had to write, but also the most important. I can’t thank them enough, but hope that my letter – and those from other people who benefited from their brave decision – helped them in their loss.

To find out more about LAM visit http://www.lamaction.org/

x

Call to Action

2011-05-20T20:56:00.003+01:00

**Thank you to those who participated - this stage of the research is now finished so they no longer require new participants.**

We have had a request for volunteers from an ESRC funded PhD researcher from Durham University. Read on for more details.

Understanding family organ donation consent

This project is examining organ donation and, in particular, the experiences of families giving consent. It is an important area of research because 42% of families decline to give consent, despite 90% of the population feeling positive about organ donation, and we need to understand the reasons behind this discrepancy better. The project is searching for family members who have been through the experience of having to make a donation decision and who are willing to talk about aspects of their experience. The interviews will be informal and not too intrusive. The researcher is interested in the environment in which decisions are taken and the ways in which this, together with family members’ background and experiences, influences the final decision.

Call for volunteers to participate in this study

This project is concerned with donor families’ experiences and background and the donation decision within the hospital setting. By learning about what you and other donor families have experienced within the hospital setting, we hope to find out more about the environment and the donation decision. I am therefore asking relatives to share their experiences, their opinions about the hospital setting and any thoughts they have regarding transplantation during a short 60 minute meeting at a mutually agreed time. Anything you may say during the study would be treated as confidential. Your name will not be recorded anywhere within the study, and of course, you would be completely free to withdraw at any time.

Any help would be hugely appreciated. The study is being fully supervised by Dr. Mike Nicholson and Dr. Sarah Xiao.

Thank you,

LLTGL Team x

Speakers project training session: 11th June

2011-05-18T20:43:00.004+01:00

We have just booked a training session for our Speakers Project, which will take place in the morning of Saturday 11th June in Richmond, Surrey.

Over the years, we have discovered that one method of raising awareness triumphs above all others; telling a real life story. Facts and figures are definitely useful, but to really make people sit up and listen, we need your help.

We are just starting to roll out this exciting new project, the aim of which is to train and support members of the transplant and organ donation community to give talks and presentations. Have you been touched by organ donation in some way? Perhaps you have watched a friend go through the struggles of waiting, maybe a family member became a donor. Are you yourself a transplant recipient? Whatever your link, you could share your story and open people's eyes as to the importance of organ donation.

Come along to our speakers training session, where you will get advice and training on how to maximise the potential of your story. We want to help and support people to share their experiences, and have received extremely positive feedback from those who have attended so far. By sharing your story, you could educate others and encourage people to sign up, and we can help you deliver your story effectively and with confidence.

If you are interested in attending on the 11th June in Richmond, Surrey, please email info[at]lltgl.org.uk. The sessions are completely free, but we have limited places, so please get in touch asap!

We look forward to seeing you there!

x

Emily

2011-05-12T09:21:00.002+01:00

I thought that I should really finish off this week's blogs myself, since my own need for a transplant was due to Cystic Fibrosis.

I had a happy and healthy childhood. I don't remember feeling that different from my friends; even though I had the daily regime of physiotherapy, nebulisers, antibiotics and inhalers to fit in, my parents never treated me any differently.

As I grew older, the lung element of the disease began to show itself, with increased hospital admissions, a chestier cough. By the time I went to university, my lungs were functioning at about 45%, and whilst I was able to live independently and have a fantastic time, I tired far quicker than my friends, became breathless very easily, and hospital admissions were now more frequent and lasted up to a month at a time.

In 2004, I was told I needed overnight oxygen. Then later that year, a wheelchair. Watching my lungs decline in function was frightening and frustrating, but I accepted these weapons and used them to fight back, to try and retain some independence. In 2005, I was told that my lung damage was so severe, I would need a double lung transplant in order to survive. I was given a prognosis of about 12 months without one.

Due to the shortage of donors, I had to cling on for 22 months before my call finally came. I was extremely ill by the time I got my call, which in turn meant my recovery was much more complex and prolonged than it could have been. However in March 2007, I was finally discharged from Harefield hospital, and walked out of the hospital doors for the first time in years with no oxygen, no wheelchair, no wires or gadgets at all. It felt strange, unfamiliar, frightening...and indescribably exciting.

People often asked me what else has changed as well as my breathing, and it would actually be easier to try and find something that hasn't changed. Gone is my pale and scrawny frame, gone is my whispy hair and weak voice. I can breathe, so I can talk, sing and laugh without pain. I can walk, I can climb stairs, I can work, I can be a sister, a friend, a daughter, a wife, and not a dependant. I have ambitions, I have dreams and goals....I have a future.

I am only here today thanks to the incredible gift of organ donation, but I have lost far too many of my CF friends, whose calls did not come in time. People with Cystic Fibrosis are living longer and fuller lives than ever before, but it is a disease that still takes 2 lives every week. Please, take a look at the CF Trust's website, and please, sign the organ donor register.

Thank you x

Victoria

2011-05-11T13:30:00.000+01:00

Victoria Tremlett is 24 years old and has end-stage Cystic Fibrosis. She has been on the waiting list for new lungs almost 4 years.

Victoria (Tor) was diagnosed with Cystic Fibrosis (CF) when she was 2 years old and during her childhood she remained fairly well. By the time she reached her teenage years she had started to feel the effects of her CF, she found herself becoming increasingly more breathless.

Things came to a head in December 2006 when she collapsed and was rushed to hospital, placed on oxygen and given intravenous drugs to stabilise her. Her lung function had crashed to 23%. She returned home after two weeks but her lung function did not improve and she began using oxygen 24/7 and a wheelchair to get out and about.

Tor says “Every aspect of my life is affected by my need for new lungs, even the smallest tasks such as getting dressed leave me exhausted. Emotionally, I can’t begin to describe the effect my situation has on both me and my family. There are days where I just feel overwhelmed by my situation. It is as though my life is on hold. I never forget the fact that when my chance comes it is because someone else has lost their life. It's not something I take lightly in the slightest. The thought that my chance may never come is just heartbreaking. On the other hand being on the list gives me a huge sense of hope, a beacon of light, that things could get better, and that is the thing that pulls me through each day. “

In a recent blog entry, Tor speaks openly and frankly about the struggles of every day life with end-stage CF: "I have been struggling A LOT even for me. Everyday things are getting harder and harder each day with me needing more and more help from my mum. Things like getting washed/dry, eating and even walking the 20 steps to my bathroom have been just too much most days. I never wish to sound preachy so try to avoid typical "most people don't realise how lucky they are" statements but it has been very hard to watch people out enjoying the sunshine, walking down the street without a care in the world. I feel like I am in a different world. Stuck in my bedroom, curtains drawn fans blazing, lungs feeling swollen and irritated, unable to catch my breath and the air all around me feeling polluted. Whereas I used to go to bed and think "tomorrow might be a bit better" I realised lately that that idea hasn't come true in several months. It has been unbearable trying to come to terms with the fact that tomorrow isn't going to be better than the day before. Some people will think that sounds negative but it's simply the stage that I'm at with my illness now."

Victoria has had 7 false alarms in the time she has been waiting – this means that she has been called for transplant but on arrival has been told there is a problem, such as damage to the set of lungs, and the operation has not gone ahead. Tor needs this transplant soon in order to survive.

To follow Tor's journey please visit her blog here.

To help give Tor and others like her a chance, please consider signing the Organ donor Register.

Thank you.

Cystic Fibrosis - a mother's perspective.

2011-05-10T09:53:00.001+01:00

This frank and emotive piece is written by Paula Elwood, who is mother to eight year-old Holly, who has CF. Above: Holly is on the left, and her little sister Ruby (who does not have CF) is on the right.

I was at a mother & toddler group when the realisation first struck me. Smiling as we watched our children play, my chatty fellow mums jokingly guessed what their sons and daughters would be when they grew up, who they would marry, what sort of men and women they would grow to be. I said nothing. Not once since my daughter had been born and diagnosed with cystic fibrosis had allowed myself these simple daydreams.

Eight years on and Holly is a smart, beautiful, courageous and sensitive girl, who takes everything in her stride. She loves her dancing, swimming, trampolining and getting up to mischief with her little sister and wide circle of friends. Apart from a couple of major bugs and dozens of minor ones, she’s stayed relatively healthy – and it’s easy to forget she’s not exactly like her friends. But still, I daren’t look into the crystal ball.

Physiotherapy, cocktails of tablets, nebulisers, hospital visits and stays are part of our normal routine and have been since Holly was born. Every year another few tablets are added, perhaps an inhaler, perhaps a few additional tests… As CF is a progressive condition and currently without a cure, it’s probably best not to dwell on the past and the gradual tweaks being made to her care.

Instead I live in the present. Balancing Holly’s routine and the day-to-day demands of life with a ‘pathological’ need to squeeze the most out of every day together, every weekend, every bedtime story – to give my family the most fun possible today, because who knows whether we’ll still be able to do the same tomorrow, next week, next month, next year?

Well-meaning friends have said they admire my lust for life and the non-stop adventures I seem to share with my girls, and some have even been misguided enough to call me ‘brave’. In fact the opposite is true.

We live as we do because of my fear. Fear that Holly won’t have the career, the wedding, or grow into the amazing woman I know she could be. Fear that one day CF will have ravaged her lungs to the point that a transplant is her only option. And fear that if we take that option, she will be one of the hundreds who die waiting every year because of the lack of organ donors.

Instead I hope only that Holly is happy, healthy and has the best possible quality of life for as long as possible, and trust that when the time comes, a heroic stranger will be there to give the greatest gift of all – the gift of life – and a chance to dream of the future.

What is cystic fibrosis?

2011-05-09T09:30:00.000+01:00

The Facts:

o Cystic Fibrosis is one of the UK's most common, life-threatening inherited diseases.

o Cystic Fibrosis affects over 9,000 people in the UK.

o Cystic Fibrosis causes the internal organs to become clogged with this sticky mucus attracting infection and making it difficult to breathe and digest food.

o People with Cystic Fibrosis have to undergo a tough daily treatment regime including taking dozens of pills, inhaled and intravenous drugs and physiotherapy.

o During Cystic Fibrosis Week, five babies will be born with CF and sadly, two lives will be claimed by Cystic Fibrosis.

o Only half of those living with Cystic Fibrosis are likely to live past their late 30s.

o There is no cure for Cystic Fibrosis.

Symptoms:

Cystic Fibrosis causes the body to produce thick secretions that particularly affect the lungs and digestive tract. Symptoms of CF can include a troublesome cough, repeated chest infections and poor weight gain. A combination of physiotherapy and medication such as inhalers, nebulizers and antibiotics can help control lung infections and prevent lung damage.

Cystic Fibrosis affects the pancreas, which makes it difficult for people with CF to digest food. This can cause malnutrition, and so people with CF take enzymes to compensate for this problem.

To find out more about Cystic Fibrosis please visit : The CF Trust Website and please keep tuned to this blog to read some personal stories of people living with Cystic Fibrosis.

Cystic Fibrosis Week - 8th - 14th May

2011-05-08T09:31:00.000+01:00

Today marks the start of Cystic Fibrosis (CF) Week. CF affects mainly the lungs and the progressive nature of the disease means that people in the end stages of the disease are often referred for transplant. Despite the considerable burden of treatment, people with CF are determined to live their lives to the full. Your support during Cystic Fibrosis Week will help people with CF to live longer and fuller lives.

Money raised during Cystic Fibrosis Week will help the UK charity the Cystic Fibrosis Trust continue to fund medical research to fight the symptoms of, and treat the cause of CF. It will also help them improve the care of people with CF, and will help provide direct support for people with CF and their families.

The Cystic Fibrosis Trust is one of the leading investors in CF research in the world. They fund work to control the symptoms and treat the cause of Cystic Fibrosis. They also fund research into gene therapy to add a healthy copy of the gene to the lungs of those with Cystic Fibrosis. A major clinical trial is hoped to begin later this year involving up to 100 young people with Cystic Fibrosis. This is the first time in the world CF gene therapy has been studied this way.

Find out how you can get more involved in CF week by visiting the website here: http://www.cftrust.org.uk/

Robyn's Rainbows

2011-04-20T14:30:00.000+01:00

Recently we've been talking about fundraising, another way to donate is through our JustGiving page that we set up to collect money specifically for our Robyn's Rainbows fund.

This is an initiative set up by LLTGL after the death of our special friend Robyn Tainty, who lost her battle for life whilst waiting for a double lung transplant in September 2007, aged just 24. Before her death Robyn was sent a balloon as a beacon of hope. Putting a smile on somebody's face is important, especially when there isn't much to smile about - and LLTGL continue to fund this project.

Following nominations from the public, Live Life Then Give Life sends struggling members of the transplant community a small beacon of hope in the form of a balloon, to let them know they are being thought of. The aim is to create a rainbow on the darkest days for those in need; to remind them that they are not alone and that sunshine might be just about to break through...even just to bring a smile to their face.

It's simple. By raising money and raising awareness! Just £12 will allow us send a Robyn's Rainbow to someone in need. We want to be able to support as many people as possible and to keep them smiling whilst they fight and hope, waiting for the call that if it comes, will change their life. Robyn’s Rainbows is dedicated to Robyn and the rainbows she brought into other people’s lives...just by being there.

Here are a few examples of Robyn's Rainbows that we have sent:

T-Shirts!

2011-04-19T16:30:00.000+01:00

Linking to our last blog about raising awarness, one of the easiest ways to do this is by wearing one of our Live Life Then Give Life T-shirts! Live Life Then Give Life began with a T-shirt campaign in 2006 and in 2011 we designed and released a new range of T-shirts to add to the collection with our now infamous I'd Give You One tag line. The design is currently available in four unisex sizes.

The T-Shirts cost only £10.00 each +P&P. If you are ordering more than 10 t-shirts, please contact us with your order directly, as we can arrange more efficient postage for larger orders.

If you would prefer not to order online, you can download this printable form and post it to us with a cheque or postal order for the correct amount.

Why buy an 'I'd Give You One' T-shirt?

To show your support for LLTGL;
To raise awareness about Organ Donation;
To stimulate conversation and encourage others to think and talk about their wishes.

To order online please visit the T-Shirts section on our website here.

So, think about it, talk about it and do something about it by buying one of our fab t-shirts and helping us spread the word!

Fundraising and Awareness

2011-04-18T20:14:00.003+01:00

We often get asked questions about how to raise money, create events and raise awareness, so we thought it was about time we gave you some ideas!

How about participating in a Challenge event to raise money for us or creating your own fundraising oportunity. You can download our A – Z of fundraising ideas for some inspiration, it takes you from Abseiling to Zip Slides and everything in between. If you hold an event we’d love to hear about it and see any photos you have – you never know, you might even make it here onto our blog or be our fundraiser of the month on our website.

If you are raising money for us there are lots of ways you can do this and now It’s easier than ever thanks to Justgiving and Virgin Money Giving! If you are doing it the old fashioned way collecting money from your friends and colleagues you can download our sponsorship form here.

As for raising awareness, try and find out when local fairs/craft shows/fetes are being held and approach organizers about the possibility of holding a stand or stall. NHSBT have lots of free materials to brighten up your stand — find out more by visiting organdonation.nhs.uk they even give you publicity tips as well as providing their free promotional materials catalogue.

Another way you could raise awareness and money for us is through your business. We are a small energetic and up-and-coming Charity and we can arrange for one of our Trustees to come and talk at your workplace to explain more about what we do and why our work is so important. If corporate sponsorship is something you or your business might be interested in then please do contact us via our contact form on our website.

We hope we have given you some ideas. Thanks as always for your continued support.

Celebrating three years as a registered charity.

2011-03-28T19:24:00.015+01:00

Three years ago today, LLTGL became an official registered charity. We have come so far in those three years and in some ways it seems a long time ago, in others, it seems only yesterday. Back in 2008 - our first year as a charity - some of our most memorable moments include our wonderful Jess spreading the word across the country by appearing on Noel's HQ, Nelly, our London advocate at the time, organising her own segment of the world's biggest walk, which Oli and Emily joined her and her family in completing (you can see the video here). That year we also had our very first advocate and trustee away day, and Holly's Battlefront project commenced; a project that would conclude in 2009 with a personal message of congratulations from the PM on the Downing St website! The biggest highlight that year was of course being named "Campaigning Team of the Year" at the Charity Times Awards - we were stunned but extremely proud!

2009 was another very busy year, with Holly's Donor Day capturing the hearts and minds of people all over the country. Team Jac braved gail force winds and icey rain to do the coastal walk and raise over £20,000 for LLTGL in May of that year, and the ever-inspiring Team Ethan joined the fight to raise funds and awareness, which they continue to do to this day, despite their gorgeous little boy loosing his fight just one month after his transplant. When the film My Sister's Keeper came out, Advocate Andrea Evans encouraged people to write to their local cinemas asking them to display donor leaflets in the foyer during the peroid that the film was shown. Andrea also managed to star in the Vodaphone "who would you donate your time to?" advert, getting Organ Donation a wonderful plug on TV! Emily featured in a short awareness film as well that year, entitled "I'd Give You One" after the cheeky LLTGL slogan T-shirt.

Our wonderful Jess was by then extremely ill and in September 2009, a twitter campaign entitled "Save Jess" was launched, which quickly gained attention of news channels and celebrities from across the UK. Following this, Save Jess-tival was swiftly created and took place in October, with the beautiful Natalie Imbruglia spearheading the event, and Jess taking her place as the inspirational and very special guest.

2010 started very sadly, when we lost our lovely Jess on January 12th. All at LLTGL were shaken by this hugely sad loss, but we knew we had to motivate ourselves to continue the fight that Jess had dedicated so much of her time and energy on. That year LLTGL Trustees attended several key talks and conferences, including the BTS conference, and the ETCO conference, where Emily addressed over 500 delegates from all over the globe. Yet more wonderful fundraising events took place, including Ts in the Park who selected LLTGL as the charity to benefit from their event that year. That Christmas, our Tor's Xmas Wish twitter campaign got attention from a variety of celebrities including Philip Schofield, Sarah Brown, and Peter Jones.

As well as these key events, LLTGL continues to regularly run media campaigns, support transplant patients, run educational talks and presentations, give talks as guest speakers at a variety of events, distribute Robyn's Rainbows, and many other things on a day to day basis.

None of the work we have done over the last 3 years would have been possible without the help and support of so many people. From past Trustees who have helped us achieve so much, to volunteers who give up their time and energy to support us in what we do - our charity is strong because of you.

We are excited and optimistic about the next three years, and hoping that they will be even bigger, even brighter, and even more successful.

With love and thanks to all our wonderful supporters,

The LLTGL Trustees

Welcoming Kirstie as our newest ambassador!

2011-03-27T09:36:00.001+01:00

We are delighted to welcome the lovely Kirstie Mills as a new addition to our LLTGL Ambassadorial team.

Kirstie is 21 years old and has just been told she has been accepted onto the waiting list for a double lung transplant.

Kirstie has already started campaigning fiercely and is showing the world that she's a force to be reckoned with! She's doing a fantastic job and we're honoured to have her as part of the LLTGL team.

A quick shout out to our other fabulous ambassadors - Tor and Rachy - who despite lots of health complications and issues, continue to work incredibly hard helping us raise awareness and spread the word about organ donation.

We are extremely proud of our Ambassadors, of their tireless hard work and dedication to the cause, and are so grateful for everything they do for us and for all those waiting.

Kirsty's Hero

2011-03-22T13:46:00.002Z

Our Advocate and Team Glasgow member, Kirsty Geddes has had the opportunity to record the single My Hero by the Foo Fighters. 26-year-old Kirsty was diagnosed with cystic fibrosis at just 9months old – she received her double lung transplant in February 2009 after waiting for 8 months on the transplant waiting list.

Kirsty sang the song at Team Glasgows Masquerade Ball (where they raised a fantastic £12,000) in memory of her donor - the lyrics 'there goes my hero...he's ordinary' are so fitting for all those people who have donated organs. Ordinary people who have signed the organ donor register doing an extraordinary thing.

The single costs £3.49 (inc postage) and is well worth it. All proceeds will be shared between us here at Live Life Then Give Life and The CF Trust. Kirsty says “I am hugely grateful to my family for the strength they have given me both pre and post transplant and she is very excited to be part of LLTGL. I feel a duty to try and make this gift of life possible for so many others who are in the position that I was, just over a year ago”

You can get a sneak preview of the single and watch the youtube video here.

Contact kirstys[dot]hero[at]gmail[dot]com to get your copy. Thank you x

Clipper Round the World Race

2011-03-21T12:39:00.006Z

A while back you may remember us blogging about the Clipper around the world race asking for transplant recipients to come forward as volunteers to take part. One person who did this was our loyal supporter and kidney recipient Holly Cocker.

Holly has volunteered to be part of a team of 10 people - all who have been affected by organ donation - and all of whom are doing a relay around the world to complete the Clipper Round the World Yacht Race. Holly will be taking part in leg 7 which will take place next year to raise awareness of what an amazing gift organ donation is.

Holly will be sailing 5129 miles from California - Panama - New York. Up until last week Holly had never sailed before and she is currently taking part in a very physically and mentally demanding program to get her up to shape in the world of sailing.

She says about the challange:
"This is something I could never have dreamed of doing before my transplant - I feel incredibly lucky to be part of it and am willing to give it my all to hopefully encourage others to sign up to the Organ Donor Register and to spread the word about organ donation. As we reach different destinations we will be publishing organ donation through the press and showing what we can do."

To follow Holly's journey and find out how you can support/sponsor her please visit her blog. All of us here at Live Life Then Give Life wish you the best of luck in your adventure Holly!

Photos Holly Cocker ©

Lorna Legs it for Live Life Then Give Life!

2011-03-19T17:41:00.006Z

Lorna Little is a 38 year old Legal Secretary from Forres, Scotland. On the 13th March Lorna ran the Inverness Half Marathon, she decided to run for us here at Live Life Then Give Life as she knows a couple of people who have benefited from a new lease of life due to organ transplantation, one receiving a lung transplant and the other a liver.

Lorna says "I, myself, am on the donor register but am aware of the severe shortage of donors so I wanted to do something not only to raise awareness but also to raise some money for the charity and the invaluable work they do. I think it is so important for charities like LLTGL to be given a voice and reading some of the heart wrenching and inspirational blogs on your website brought a tear to my eye and motivated me to do something about it. It also gave me the determination to reach my goal in my first ever half marathon."

There's no stopping Lorna now who says "bring on the next challenge" so watch this space. Lorna has raised a fantastic £330.00 so far.

Thank you Lorna, It is down to people like Lorna fundraising for us that we can continue the work that we do, supporting people on the transplant waiting list, eduacting people about the importance of transplants and encouraging people to sign the Organ Donor Register.

If you would like to support Lorna then please visit her Just Giving page: http://www.justgiving.com/Lorna-Little0

If you are planning a fundraising event, or have raised money for us, get in touch via our website so we can shout about you here on our blog!

Thanks

Daybreak spreads the word about Organ Donation.

2011-03-14T10:12:00.005Z

We were recently contacted by the lovely Kirstie Mills, about using her story to raise more awareness.

Kirstie is 21 years old and has Cystic Fibrosis. She lives in Exeter with her fiance, and is currently undergoing her final transplant assessment tests, with the hope of getting on the waiting list as soon as possible. Kirstie is a very beautiful eloquent young woman and has started keeping a blog to try to convey to people what life is like for her at the moment.

Emily got in touch with ITV's Daybreak about Kirstie's story and they decided they wanted to feature her! Unfortunately Kirstie was too ill to travel up to London on the day, so Emily went in her place to talk about transplantation and raise awareness about the chronic shortage of donors.

The interview was shown on Friday morning and they also showed some very moving footage of Kirstie talking about her blog and her current health status, which was filmed by her local ITV news and which you can see here.

A big thank you to Daybreak for helping us spread the word, and of course to Kirstie for allowing us to share her story. All of us at LLTGL are wishing her the best of luck for her assessment and hope to hear that she's on that waiting list very soon.

World Kidney Day 2011

2011-03-10T19:42:00.006Z

Today marks World Kidney day, it is a joint initiative of the International Society of Nephrology (ISN) and the International Federation of Kidney Foundations (IFKF).

The mission of World Kidney Day is to raise awareness of the importance of our kidneys to our overall health and to reduce the frequency and impact of kidney disease and its associated health problems worldwide.

Other Objectives are:

Raise awareness about our "amazing kidneys"

Highlight that diabetes and high blood pressure are key risk factors for Chronic Kidney Disease (CKD)

Encourage preventive behaviors

Educate all medical professionals about their key role in detecting and reducing the risk of CKD.

Stress the important role of local and national health authorities in controlling the CKD epidemic. On World Kidney Day all governments are encouraged to take action and invest in further kidney screening.

Check out the World Kidney Day website for more information, especially their 7 Golden Rules to reduce the risk of Kidney Disease.

Our trustee Holly went along to the Royal Liverpool Hospital to speak to staff and patients there and hand out leaflets etc. She provided her photo and a quote to show what a difference her transplant has made to her life for their display she says

"Life since my transplant is barely recognisable. I have my health back and I am enjoying the freedom from dialysis and the fact I can do normal everyday things that people take for granted. I have been to places I have never been before, experienced things I have never experienced before and met people that I would never have met previously. I have got my independence back and I am able to be me again! I work hard, play hard and I am loving every moment of my new life. I went to uni, now have a job, and live in my own apartment! None of this of course would have been possible without my donor and the generous gift they gave to me – the gift of life, for which I will be eternally grateful."

There were stands telling people about Organ Donation and how to sign up to the Organ Donor register, a stand about the local kidney support group, one to test your blood pressure and one held by our lovely friends over at the Donor Family Network.

Happy World Kidney Day from us all here at LLTGL x

More fantastic fundraising.

2011-03-08T09:00:00.001Z

You may have read in one of our previous blogs that Terry is running the Bupa 10k run in memory of his nephew Jack, well here we have another chap donning his running shoes and running for us in May!

Andy Shaw knows only too well the effect organ donation can have on a family as his sister (our very own trustee Holly Shaw) received a kidney transplant in October 2008 after 3 years waiting. Andy supported his sister as she was waiting on the transplant list by visiting her whilst she was on dialysis, ringing her everyday and making her laugh (usually at the most inappropriate times!)

Andy says “I am taking part in this run as this is a charity close to my heart. Live Life Then Give Life supported Holly whilst she was waiting for her transplant so it’s time for me to give something back to them.”

Andy believes so much in the message that we are trying to spread that he even has a permanent reminder of this on his back, in the form of a tattoo!

Good luck with the training Andy, and thank you for doing this for us! x

If you want to support Andy in his efforts please visit http://www.justgiving.com/andylltgl

The Fringe

2011-03-06T22:49:00.000Z

On Sunday 13th February 2011 I was invited to attend a Girl Guiding event called “The Fringe” which is part of Innovate. Innovate is a national forum for Girl Guide members aged 16-25 years old to discuss and contribute to the direction of Girlguiding UK. Approximately every eight months about 150 members meet up to contribute their ideas in workshops designed to move Girlguiding UK forward.

This event was held at the Dunkenhalgh hotel in Accrington, and was a packed weekend for the girls, throughout the event they raised money for us here at Live Life Then Give Life by doing silent auctions, selling balloons, giving donations and holding a medieval themed night.

The event culminated in “The Fringe” which was essentially a market place for the girls to walk round the stands and look at things that may interest them as guides, whether it be new adventures or new badges to obtain. This is where we set up our stand and chatted to the girls about our work and what we are all about, they were really receptive and friendly.

It was great to hear that most of them had already signed up to be Organ Donors whether it had been through their driving licence, Boots advantage card or online. A few of them that hadn’t already signed up took the opportunity to do it there and then!

Believe it or not I saw someone I knew as I actually used to be a girl guide myself (yes this is true, many moons ago!)

The event and the amazing girls managed to raise a fantastic £314.17 for us, we are so thankful for their hospitality and ongoing support. If you want to do a good deed today why don't you follow in the footsteps of the Girl Guides and sign the Organ Donor Register.

Thank you x

Cake Bake!

2011-03-05T20:13:00.006Z

Well its been and gone again as quick as a flash – Valentines Day and our yearly Valentines Cake Bake weekend!

Lots of you used Valentine's Day to do a good deed and make a difference this year by holding RED themed cake bakes up and down the country! Whether you used this opportunity to raise awareness of organ donation, educate your colleagues or encourage people to sign the Organ Donor Register you all did an amazing job.

Rachel Ellis held a tea party and raised a fantastic £47.00!

Abby Barker raised a wonderful £25.00 Thanks to her colleagues at University Campus Suffolk Library for helping to eat her cakes and raise money at the same time.

Zara Ilic baked some scrummy looking cakes and sold them to her family and friends raising a fabulous £30!

Our Trustee Holly held a cake bake at the Nursery she works at and the staff, parents and children raised a fantastic £38.38!

If you held a cake bake and want a mention on our blog please send details and a photo to info[at]lltgl.org.uk. Also if you didn’t manage to hold a cake bake but want to show your support there is still time to donate on our Just Giving Cake Bake Page here: www.justgiving.com/GVCB2011

Well done and Thank you so much for your support as always!

For Jack...

2011-03-03T20:43:00.004Z

Manchester entrepreneur and GödelTech MD, Terry Bland, is running the Bupa Great Manchester 10k Run on 15th May in order to raise money for charity us here at Live Life Then Give Life and raise awareness of the importance of organ donation, in memory of his nephew, Jack Mclean, who died last week on his 19th birthday from a fatal brain bleed.

Jack was out celebrating his birthday at university when he suffered a bleed in his brain. After a three hour operation he was pronounced brain dead and his life support switched off. He had always wanted to be an organ donor and because he had made his wishes clear to family and friends, his organs were able to save the lives of five other people.

Jack aged just 19.

Terry said: “While it is a tragedy that Jack was taken from us so suddenly, his family is taking some comfort from the fact his generosity has given the gift of life to five other people, and helped another four.

“It vital for those wishing to donate organs after death to tell others, and it is much easier these days as you can register your wishes online with the NHS Organ Donor Register.

“Live Life Then Give Life’ does such an important job in making people aware of the significance of organ donation, as well as supporting transplant recipients. It is a fantastic charity and I hope to raise at least £5k for them, in memory of my nephew, through the Great Manchester Run and other activities I’ll be taking on throughout the year.”

Those wishing to help Terry achieve his target can donate via his Just Giving page: www.justgiving.co.uk/Terry-Bland

We were also delighted to hear that Live Life Then Give Life is also the official GödelTech charity for 2011.

We are of course thinking of Jack, Terry and the whole Family. If you want to do something amazing like Jack did after his death, then please consider signing the Organ Donor Register.

Thank you

Amazing Andrea

2011-02-28T21:25:00.006Z

Andrea is a very modest and unassuming young lady who just gets on with things When Andrea was 16 years old, she contracted Meningitis, resulting in her being hospitalised for over nine months, requiring a double amputation of her lower legs and going into kidney failure.

Andrea was placed on the waiting list for a new kidney and got her life-changing call on Christmas day in 2003.

To read more about Andreas story click here, but the reason we are writing this blog is to say goodbye to Andrea.... She has been an advocate since 2007 and has worked tirelessly to encourage people to sign the Organ Donor Register, but now she is going on a new adventure! Andrea is moving to New Zealand with her Kiwi boyfriend Mike.

Andrea was our liaison for the Welsh campaigns we work along side, such as Donate Wales. She is a regular in the Welsh press and initiated our campaign encouraging people to contact their local cinema's and ask them to stock Organ Donation leaflets whilst the film My Sister's Keeper was showing. Andrea was also responsible for us being featured on the Vodaphone advert when she sat on top of a giant charity tin declaring that she would give donate her time to LLTGL!

Whilst an advocate Andrea has also done many talks to 100's of people, she has an inspirational story to tell and uses this as a tool to educate people about the importance of Organ Donation. Other highlights include... attending the Live Life Then Give Life abseil in 2009 helping to raise over £3000 for us here at LLTGL.

The British Transplant Games in 2010.

Advocate away weekend 2009

Andrea you are truly inspiring, you have done so much for us here at LLTGL and for the world of Organ Donation. Thank you so much for all the incredible work you've done over the years. You have been a truly wonderful advocate and we've been extremely proud to have you as a member of the team. There is no doubt that your hard work, creative ideas, and constant campaigning will have saved lives and we're very grateful for your contribution. You're an absolute star.We will miss you so much but wish you and Mike all the love and luck in the world!

Extraordinary Emily

2011-02-15T20:49:00.006Z

On Thursday February 10th the Live Life then Give Life team attended the Just Giving Awards at the Emirates Stadium in London. We were up for Charity of the Year (people's choice) and Emily (our wonderful chairman) was up for the Lifetime Achievement Award (yes at 26!).

Sadly we didn't win the Charity award it went to the amazing charity Shelterbox however Emily’s hard work and determination in the field of fundraising was recognised as she won the lifetime acheievement award. Emily campaigns relentlessly to raise awareness about both organ donation and cystic fibrosis so we were thrilled that she was rewarded for her efforts!

Emily started fundraising at the tender age of 10, when she held a small event in her back garden, raising £120. She has since helped raise over £60,000 for various charities, including the Cystic Fibrosis Trust and us here at Live Life Then Give Life.

Emily has never stopped campaigning and in 2006 did her biggest fundraiser to date, where she left her hospital bed to take part in a 5K challenge, using a wheelchair and oxygen to help her complete the course and raising over £20,000.

Emily says “I love fundraising; it gives me such a buzz knowing that I’m doing something proactive for causes I care so much about. I was absolutely stunned to win at the Justgiving awards last night and completely overwhelmed. I’m hugely grateful to all those who continue to support me in my fight to raise awareness and funds for both Cystic Fibrosis and Organ Donation.”

Matt Coyne, our Vice-chairman says “I was wondering how someone so young could receive a Life Time Achievement award...I believe anyone that knows her, has listened to one of her talks or chatted to her in our online community, would be able to answer that question for me with ease.”

Read an article from Emily's local paper here.

Well done Emily, you are inspiring and we are all so proud of you x

Fundraiser of the Month - Toughest Foot Race on Earth!

2011-01-26T18:04:00.005Z

For most people, the idea of running a Marathon is terrifying enough, however 29-year-old Alexa Torlo from Moseley, Birmingham has decided to take on the incredible challenge of running the Marathon Des Sables; an endurance race equivalent to 5 and half marathons over 6 days in the blistering heat of the Moroccan Sahara Desert.

Motivated by the needless death of a close friend and colleague, who could have been saved by the availability of a heart, Alexa is determined to raise awareness and funds for us here at Live Life Then Give Life and our good friends at the Donor Family Network.

When asked why she wants to undertake such a momentous physical challenge, Alexa, says “I’m running this extreme race to raise a considerable amount of money for a charity that sits close to my heart. I feel so fortunate to be healthy and able bodied and the suffering I’ll endure is incomparable to the real pain and uncertainty that people who are in need of new organs have to experience.“

Alexa was inspired to raise awareness following the death of her friend Dan, who was in desperate need of a transplant due to heart failure. She says “At the tender age of 25, Dan lost his life. If a heart could’ve been found for him he may well still be alive today.”

“All other problems fade into insignificance when your life is at risk. For these reasons I must do this marathon. Not only in memory of my dear friend and colleague Dan, but for all those who are hoping to live a full and healthy life right now, but who are waiting for new organs to make that a possibility.”

Alexa feels strongly that she is lucky to be a fit and healthy young woman, and wants to use this to help others less fortunate. She is determined to make a difference but needs your help and is urging people to donate to her cause, please visit www.justgiving.com/Alexa-Torlo

Thank you

Transplant 2013

2011-01-24T08:58:00.003Z

In 2010, we were asked to participate in the formation of Transplant 2013, a group of patients (and patient organisations), Clinicians and Industry representatives with the following mission statement:

"To promote leadership of organ donation and transplantation in Parliament and other relevant institutions and facilitate communication and consensus within the transplant community in order to support the implementation of the Organ Donation Taskforce’s recommendations, ensure that the target to increase organ donation after death by 50% in 2013 is met, and significantly increase the number of organ transplants."

The inaugural AGM was held in May but the formal launch was on 23rd November in Portculis House, Westminster and trustees Mandy (our representative on this project), vice-chair Matt and Holly all attended.

Transplant 2013 has a wonderful champion in Chris Williamson MP (Shadow Minister for Communities and Local Government) who has been personally affected by organ donation as his wife Lolly sadly died waiting for a single lung transplant 7 years ago. He spoke candidly about his wife, and their struggles as she waited on the transplant waiting list. There were speeches from the President of the British Transplant Society (BTS) Keith Rigg (who is also Chair of Transplant 2013) and the National Clinical Director for Transplantation, the wonderful Chris Rudge.

Excitingly Chris Williamson launched the APPG (All Party Parliamentary Group) on Transplantation on December 15th, and so far has good interest from his fellow MP’s!
As well as LLTGL and a number of MP’s, other groups represented included the various groups participating in Transplant 2013, such as:

Charities and Clinician Groups included: British Transplant Society; National Kidney Federation; British Liver Trust, Cystic Fibrosis Trust and the British Society for Immunology

From Industry – Novatis; Astellas, Genzyme and Alexion

As well as others we may not have mentioned!

It was a great opportunity for us to talk with people who share our goals and want to see the numbers of transplants being undertaken increased and more people signing the Organ Donor Register. We met up with some old friends too including Lucy Pearson and her Mum.

So watch this space, we will keep you updated on our continuing work with Transplant 2013 and its progress.

Lovely Lou

2011-01-21T21:10:00.004Z

Do you want the good news first or the bad news?

Well we'll start with the bad, our lovely Louise Lawrence is stepping down as an advocate for us, however the good news is she is taking a sabatical and will be returning in a years time!

The story behind her leaving is an amazing one. Lou works for Thomas Cook and she was flown out to their managers conference in Turkey as a last minute arrangement in December 2010. Unbeknown to her, her Mum and two very close friends and colleagues were flown out the next day in secret…her friend had been planning this for four years and had been waiting until Lou got better!

As Lou was sat enjoying the Gala Night on the final eve her very close friends went on stage and started talking about someone who was about to receive the Roger Flowers CEO Employee of the Year Award. It took her a long time to realize it was her!

Louise went on stage and there were several surprises for her: a VT from her friends, her Mum appearing on stage and she was then told she could have an all expenses paid holiday to anywhere she wants in the world! Amazing!

So Louise is starting a new adventure, we are all so pleased for her and her new role being the Thomas Cook Ambassador for the UK and Ireland

She will be attending many events as a guest of the CEO of Thomas Cook.

Louise says "I hope to achieve many things with my role including involvement with the Thomas Cook Childrens Charity and the Olympics 2012. Being an advocate was such a special role. Having a platform to directly address an issue so close to me and my family was a true honour. Working with a great team who share an ethos was incredible and I've learned so much along the way. I feel like a truly valued member of the LLTGL team and hope to return as an advocate in the future."

We at Live Life Then Give Life wish you lots of love and luck on your new venture and we can't wait to have you back in a years time!

Katy urges people to Live Life Then Give Life

2011-01-14T18:43:00.005Z

21-year-old Katy Savage from Biddulph in Staffordshire fights for every breath. Katie has a lung disease which has left her lungs functioning at just 23% and she is now in desperate need of a double lung transplant. In spite of her plight, this brave and inspirational young woman is determined to raise awareness about the need for organ donors, and funds for us here at Live Life Then Give Life.

Katy with her beloved dog Poppy

Katy has a rare lung disease called Obliterative Bronchiolitis and endures a daily routine filled with medication, treatment and frequent hospitalisations.

Katy was just 17 when she was told that a double lung transplant would be her only hope of survival. Katy says “This came as a terrible shock to me, my mum, dad and little sister because transplant had never been mentioned before. I was told only small pockets of my lungs still worked. My condition is so rare that they were unable to tell me what my prognosis was.”

In April 2007 Katie went active on the waiting list and Life for the family went on hold as she waited, but months turned into years and the call still didn’t come. Then in November 2009, Katy caught swine flu and became critically ill. She was rushed to intensive care where doctors battled for 2 weeks to keep her alive.

Thankfully Katy survived, however she is now in a severely weakened state and relies on a ventilator 24 hours a day to keep her lungs working. Katy is only too aware that her call may not come in time. Despite being so very ill, Katy is determined to raise as much awareness as possible, and is even trying to raise money by not eating chocolate or crisps for a month and asking for people to sponsor her.

Katy says “A transplant would allow me to do everything; I could have a life and I would be able to do things I would never have been able to do.”

There are more than 10,000 people like Katy in need of an organ transplant right now. 1,000 of those will die this year. You can sign the organ donor register online at www.lltgl.org.uk or by

Please consider sponsoring Katy’s fundraising challenge at http://www.justgiving.com/katysavage

Katy you are an inspiration to us all here at LLTGL and we thank you for all your courage and hard work.

Christmas Media Campaign 2010

2011-01-10T09:27:00.005Z

Happy New Year LLTGLers - hopefully you've all had a wonderful festive period and are geared up and ready for 2011!

We finished off the year with our Christmas Media campaign which was, as usual, a huge success. Thanks to dozens of people touched by organ donation sharing their stories with us, we were able to get the message out to millions of people across the UK about how organ donation transforms lives.

14-year-old Aaron and his mum Cat (pictured above) made the front page of the Peebles Times with their story about Aaron's liver and small bowel transplant.

Double lung recipient Clair Hemmington was featured in her local paper along with her beautiful 7-year-old daughter Lucy.

Rich Burbedge spent last Christmas in hospital, fighting for every breath, but this year was able to spread the word about his new lease of life, thanks to his double lung transplant. Siobhan Morris from London also celebrated a Christmas she never thought she'd see, and made the front page of her local paper.

The Romford Recorder featured LLTGL Ambassador Victoria Tremlett and her campaign Tor's Christmas Wish. Fellow Ambassador Rachy was featured on BBC Manchester radio and BBC Northwest, as well as in the Manchester Evening News - hugely inspirational as Rachy has suffered many complications since her transplant and yet remains so grateful, reminding people that without the transplant, she would not even be here.

Angharad Van Der Walt from Pontypridd in Wales was featured in her local paper talking about her wait for new lungs. We were delighted to hear that Angharad was called for transplant in the New Year and is currently recovering in Harefield hospital. It's early days but so far she is doing well. We're all thinking of you Angharad, and of course of the family who said yes and who have given you the gift of life.

According to calculations so far, our Christmas media campaign reached over 2.9 million people this year. Huge thanks to all the fantastic volunteers, just some of whom are detailed above, who shared their stories with us, and with the general public. Raising awareness really does save lives.

Reflecting on 2010

2010-12-23T17:00:00.002Z

What a year 2010 has been; full of ups and downs, triumphs and tears. We will be closed over the Christmas period from 24th December 2010 till Monday January 10th 2011. Before we go, we look back and reflect at some of the key moments over the last 12 months.

We started the year with a bit of a rollercoaster, where hearts were uplifted when our gorgeous Jess got her call for Transplant just after Christmas. Sadly, 4 and a half years of waiting meant Jess' body was just not strong enough, and our inspirational girl passed away on 12th January 2010. At this time of year, our thoughts are with the donor family who tried to save her life, and with her family, who will be feeling her absence very much this Christmas.

There are so many awareness-raising opportunities we could talk about, including dozens of talks, stands and presentations. 2010 saw more fantastic work from our advocates and our Ambassadors Rachy and Tor , as well as Trustees attending events such as the BTS congress, British Transplant Games and the ETCO conference to name a few. Our media campaigns have continued to expose millions more people to the subject of organ donation, and we're hugely grateful to all those who helped by sharing their life stories with us this year.

Our fabulous fundraisers were also on top form in 2010! From organising cake bakes to running marathons, from a charity single to an entire music festival - thousands of you across the UK did your bit to help us continue raising awareness and saving lives.

Thanks to organ donors like George and their families, hundreds of people like Rich are getting ready to celebrate their first Christmas with a new lease of life and hope for the future. However due to the shortage of donors in the UK, there are around 1000 families like the Barr family who are now preparing for their first Christmas with someone missing; someone whose life could have been saved by a transplant, but who ran out of time.

We are looking forward to 2011 as it brings with it new opportunities to booster organ donation awareness and raise the profile of transplantation and its ability to transform lives. With your support and hard work from all of us, we can get even more people signed up to the organ donor register, increase the number of transplants that take place, and save even more lives.

Wishing all our supporters a wonderful Christmas, and a happy and healthy 2011.

Love from us all,

The LLTGL Team

Our Em

2010-12-22T21:32:00.003Z

If any of you have ever had the chance to hear our Chairman Emily speak about her life then you will know what an inspirational person she is and what an inspirational story she tells.

We at Live Life Then Give Life believe that one method of raising awareness that triumphs above all others is telling a real life story. Emily works constantly and tirelessly to save and improve the lives of people on the transplant waiting list and the way she does this best is by talking (well, are you surprised?) This week she has been on BBC Radio Surrey's breakfast show as part of their life stories section.

Emily's interview has been split into 4 parts with the final part being aired on BBC Surrey tomorrow at 9.40am. The other 3 parts can be heard on IPlayer by following the links below:

Part 1 - 53 Minutes in. - Emily talks about life before transplant, using a wheel chair and trying to hold onto her indpendance while Cystic Fibrosis compromised it.

Part 2 - 1 hour 49 Minutes in. - Emily talks about being given 12months to live, her work for Live Life Then Give Life and life on the transplant waiting list.

Part 3 - 1 hour 49 Minutes in. - Emily talks about life after transplant 4 years on and her future, thanks to her donor.

Well done Emily, you are and continue to be an inspiration to many people and we are so pleased to have you as our Chairman x

Tor's Christmas Wish - campaign update

2010-12-20T09:45:00.005Z

It's been just 7 days since we launched our Tor's Christmas Wish campaign, and it has already been attracting a huge amount of attention!

People all over facebook have been sharing her story and urging others to do the same. Upon reading her story, Niall Murphy set up this facebook page and donated some advertising space to raise the profile even further - thank you Niall!

Tor says she has had more messages than she can keep up with, and has been completely overwhelmed with the support and kindess from people touched by her story.

The biggest success so far has been on Twitter, where not only have thousands of kind souls been retweeting our messages, but the celebs have been getting involved too! TV presenters Philip Schofield and Ben Shephard, actress Tamzin Outhwaite, Absolute Radio DJ Christian O'Connell, Loose woman Zoe Tyler and actress Sierra Bogess are just some of the big names that have been helping us spread the word. Special mentions to Sarah Brown, Duncan Bannatyne and Peter Jones who have not only retweeted but have also urged others to do the same and sent messages of support to Tor.

Here are a few of the tweets from those moved by Tor's story that prove that campaigns like this really can make a difference:

"Thanks to you and this very brave young lady I have just registered to donate all my organs for transplant in the event of my death! Thanks for raising awareness !"

" I have just received my donor card, thanks to the Twitter awareness campaign. I hope lots more people take the time to apply."

"Have signed up for organ donation after seeing your xmas wish - best of luck with everything. Hopefully my bits are useful one day!x"

"Read your story tweeted by @DuncanBannatyne Praying that you get your wish lovely lady. My mum helped someone 2 see after her death xxx"

"Have just signed the register. Sending you lots of love and best wishes for Christmas and beyond x"

We want Tor's plea to get as much exposure as possible - could you help us? Do you have a media contact or a celebrity pal that might support Tor and help her Christmas wish come true? Please get in touch if you have an idea at info [at] lltgl.org.uk

Thank you again for all your support.

A Gift of a Lifetime

2010-12-15T21:10:00.003Z

We received this lovely poem from May Thomson, who's been following our Christmas campaign for Victoria Tremlett on Twitter. You too can follow Tor at @tor87 or the campaign #torsxmaswish

A Gift Of A Lifetime

We all have hopes and fears,
Many of them can reduce us to tears,
All reading this once dead are spares,
Our ups and downs of daily life
Imagine needing an Organ to stay alive,

Most of us do not want to consider,
What happens once we are dead?
Think Donate our Organs,
Then others may lead a life,
That’s is full instead of life in bed,

A Heart to Beat, Lungs to Breathe, and Eyes to see,
All can be used after thee,
So carry a card register on the internet,
Then the recipients can get set,

Improved lives free to live,
So please once you are dead,
Your Organs please please give,
Through time of great sadness,
Bring joy to others instead,

In Twitterland @Tor87 has inspired me,
To ask you all your Organs to Donate,
So others live a life active and free,
Please please fulfil her plea,

The soul moves on the body dead,
By Donating parts live on instead,
So bring joy back to these people lives,
Next time might be one of your own,
That needs that vital Organ to survive.

© May Thomson
2010

Tor's Christmas Wish

2010-12-13T09:30:00.001Z

LLTGL Ambassador Victoria Tremlett is 23 years old. She's beautiful, clever, passionate and ambitious, but her life is currently on hold whilst she waits and hopes for a double lung transplant.

Tor has been waiting for over three and a half years now, and so knows her time is running out fast. She has decided to make a Christmas Wish, and we need you to help it come true. Please read what this incredible lady has to say and spread the word.

"My name is Tor and I'm 23 years old, however unlike most 23 year olds I am waiting for a double lung transplant to save my life. When I was put on the transplant waiting list I was told I had 18months to live, I have now been waiting 3 and 1/2 years, and it doesn't take much to see I am living on borrowed time.

I use oxygen 24/7 to support my failing lungs, a wheelchair to leave the house, the majority of my day is dedicated to medical treatment just to try and keep me stable. The smallest tasks like getting dressed, combing my hair and brushing my teeth leave me absolutely exhausted and my mum has to help me with everything.

My Christmas wish would ultimately be to get the transplant I so desperately need, but due to the shortage of donors, this may not happen. Without a transplant this could be my last Christmas, and so this December, I want to get at least 5000 people to sign the organ donor register, in the hope of saving lives.

50% of people waiting for lungs will die purely because not enough people have signed up to donate after their death. Each of us has the power to change this statistic. I don't know if my call will come but by signing up you will create chances for so many people facing a death sentence.

Please help me achieve my Christmas wish and give me hope, a future and the chance to see next Christmas.

Thank you."

What you can do:

Sign up! It's quick and simple, just go to http://tinyurl.com/torsxmaswish

Be proud about the fact you've signed up! Let people know, especially your next of kin.

Pass the message on. We'd love to help her see 5000 new names on the Organ Donor Register by January 1st but we need you to help spread the word about Tor's Christmas Wish.

On behalf of Tor and everyone else waiting, thank you for your support. It literally could save lives.

Justgiving Awards 2011

2010-12-02T17:08:00.004Z

Last year, Emily and Matt were lucky enough to attend the first ever Justgiving awards which were held at the RIBA building in London. They had a wonderful time and met and heard about many inspiring individuals who achieve so much through hard work and determination.

Nominations for the 2011 Awards are now open, and you can take a look here! Justgiving say "They're our way of recognising the outstanding individuals, teams and charities who together have helped to raise over £175m for worthy causes this year."

Do you feel we're doing a good job? Maybe you want to nominate LLTGL for one of the categories! And there aren't just awards to recognise the work of charities, individuals who have made outstanding contributions will be featured too.

There are a variety of categories such as youngest fundraiser and the lifetime achievement award that you could nominate someone you know who you think deserves recognition. Why not take a look at all the categories here: http://www.justgivingawards.com/

Charlene's Project

2010-11-30T21:52:00.006Z

Charlene was born with the genetic condition Cystic Fibrosis and spent lots of time in and out of hospital during her life for treatment such as intravenous antibiotics. During the last 12 months of her life her health deteriorated and she spent more time in hospital than out with recurrent chest infections.

As hospital stays increased Charlene was unable to attend school, she achieved her AS’s but was too ill to complete her A Levels. Charlene was placed on the transplant list for a lung transplant in October 2009 and instead of sitting back and wallowing, whilst on the waiting list Charlene worked hard to raise the necessary money to build a school in Uganda naming it “Charlenes Project” She visited Uganda in March 2008 and hoped to go back this year but was unable to due to her health.

Talking of her project before her death she said “I loved Uganda and saw how little the children had there. I want to make it possible for some children there to get an education. That way my WAITING will have made their life better.”

Sadly Charlene passed away on 30th October 2010 after a 18months on the transplant waiting list - her time ran out. Speaking of his daughter Charlene’s father Dickie says "She was totally inspirational."

"I'm proud to have known her. In her short life, she accomplished so much more than I or anyone ever will. She never once complained about having Cystic Fibrosis or what she was going through."

More than 10,000 people in the UK need a transplant to save or transform their lives 3 people die every single day waiting for a transplant.

Charlene's father Dickie is now keen to raise awareness of Organ Donation by telling his daughters amazing story and encouraging more people to sign the Organ Donor Register so other families do not have to suffer such a loss like that of his daugher Charlene.

Check out this incredibly moving video of Charlenes Journey.

We are sure you will agree that it is a truly inspirational story about a brave young woman. To read more about the continuing work and the legacy Charlene leaves please visit the Charlene's Project website: http://www.charlenesproject.org/

We need YOU to help us raise awareness this Christmas!

2010-11-26T09:50:00.003Z

With less than a month to go till Christmas, we're getting started on our Christmas Media campaign for 2010! It has been hugely successful every year so far, and the most important element of this campaign is you! We need our supporters who have been affected by transplantation or organ donation to get in touch if they feel they could help us.

What is the LLTGL Christmas Media Campaign?
Every Christmas, we create press releases for volunteers from all over the country who offer to share their story with us and the media. Christmas is a particularly appropriate time as it's a period when we think of giving to and supporting others, a theme that ties in well with organ donation. We then pitch these to local newspapers (and sometimes on a wider scale, if appropriate). Volunteers are consulted throughout and there is never any obligation.

Who does LLTGL need for this?
Anyone affected by organ donation or transplantation! Perhaps you're waiting for a transplant, maybe you're alive today thanks to the gift of a stranger. Are you a donor family member who's keen to help spread the word? Perhaps you're a friend or family member who has been touched by these issues and you want to do your bit. Every story is powerful in its own unique way, and if you think you might be able to help us by sharing yours, we'd love you to get in touch.

OK I want to help, what now?
Email info [at] lltgl.org.uk and we will send you some basic questions which will help us start creating your press release. We will then get back in touch with you to go through the release and ensure you're happy with everything before we go any further.

Facts and figures are great, but it's been proven time and time again that the best way to strike a chord with the public is to demonstrate the reality behind the statistics. With your help, we can enable more people to understand just why organ donation is so important, and why we all need to shout Live Life Then Give Life!

On behalf of the 10,000 people desperately waiting right now for that life-changing call.... thank you x

Team Glasgow's Masquerade Magic.

2010-11-17T11:59:00.005Z

On Friday 29th October, our three Scottish advocates Kirsty, Victoria and Jac (aka Team Glasgow) hosted a glittering Masquerade Ball to raise funds for LLTGL.

The guests arrived around 7pm, donned in amazing masks and beautiful dresses, and sat down to a beautiful three course meal. Team Glasgow got up to welcome everyone and Jac explained the background to the three girls’ stories and why they were here tonight.

As part of the event, each guest received a flower seed packet with the message that these were to be planted in memory of the girls’ donors, and organ donation and LLTGL leaflets were on all tables. The evening also included several incredible singers, masked ballet dancers, an awareness-raising slideshow, a raffle and an auction!

One of the highlights of the evening was Kirsty, who received her double lung transplant a year ago, singing 'My Hero' by the Foo Fighters, in memory of her donor. It was an emotional performance and she got a wonderful response from the assembled guests.

Jac says “The night flew in but everyone seemed to be having a great time and there was a wonderful atmosphere in the room. It was such a celebration of us still being here, still standing and looking to the future - and hoping we can help others also get this opportunity.” You can read the rest of her account here and see a variety of photos from the night here.

The evening was a huge success and this fantastic trio raised over a staggering £12,000 through their efforts and hard work. We are hugely grateful to not only Team Glasgow, but to everyone who supported them in any way.

All three gorgeous girls are only alive today thanks to people who signed the Organ Donor Register. Remember: Think about it, talk about it, do something about it!

LLTGL Away Weekend

2010-11-15T22:01:00.008Z

On 16th and 17th October, LLTGL held their 2010 away weekend for Trustees and Advocates in Croydon. The rather lovely ASP Events gave us use of their offices for the weekend completely free of charge, which was a huge help!

Representing our Advocate team were Lou, Kirsty, Tori and Jac, the latter three travelling down all the way from Scotland to be there.

The weekend was a huge success and extremely busy, as we tried to cram in as much information, training and brainstorming as possible! It was a wonderful opportunity for the team to get together, to share ideas, facts and information, and just to get to talk face to face - a rare opportunity due to our distribution around the country!

To everyone's delight, our brand new I'd Give You One T-shirts arrived in time for the weekend, and we are thrilled to announce that they are now on sale! You can find out more and order your T-shirt by clicking here. There will also be a Live Life Then Give Life design available shortly.

Kirsty and Matt modelling our new Ts - get yours now!
www.lltgl.org.uk/t-shirts

The British Transplant Games

2010-10-06T09:14:00.000+01:00

On the 22nd August, LLTGL Trustee Holly Shaw and Advocate Andrea Evans had the privilege of attending the British Transplant Games - not to take part in any races we hasten to add (who knows, maybe next year!) but to host a stand and represent Live Life Then Give Life.

They set up the stand and chatted to various people about Organ Donation, and were obviously speaking to a somewhat converted audience as everyone there was affected by transplantation! However it was great to see some familiar faces such as Bethany Salmon, Catriona Hamilton of Transplant Kids and Pauline Weaver and other members of the Donor Family Network.

Everyone had the same thing in common yet the competition was as fierce as any other event in the athletic calander! Speaking to one athlete James Colbeck, he said “Training for months to compete against similarly able athletes is an achievement in itself, but the competition was fantastic. I am thankful for my background in athletics, but natural thirst for winning isn't enough anymore and for the World Transplant Games in Sweden I will have to work a lot harder. Of course I couldn't be here if it wasn't for all those involved at Manchester Royal Infirmary, friends and of course, my mum without whose gift of life [her kidney], I wouldn't be able to compete at all.”

Andrea and Holly watched races and events and found it heart-warming to think everyone at the games had the same thing in common, they had all had transplants and they wouldn’t be competing (or may not even be alive) if it wasn’t for someone signing the organ donor register and their family agreeing to donation.

Please sign the Organ Donor Register so that more people can take part in the transplant games, but not only that so more people can have a second chance at life!

Think about it, talk about it, do something about it.

Trekking for Tor

2010-10-03T17:30:00.008+01:00

On Saturday 11th September, our fab Trustee Matt and his lovely wife Bex took on an astonishing challenge; to walk 40 miles in less than 24 hours in what they called "Trekking For Tor".

Saturday 11th is a very significant date for Matt and Bex, as their beloved friend Robyn Tainty sadly passed away this day in 2007, when she ran out of time whilst waiting for a double lung transplant.

Setting off before sunrise!

LLTGL Ambassador Tor Tremlett and the loss of Robyn were their inspiration and motivation, as the determined pair set off at an impossibly early hour, across the South Downs.

Tor texted the two constantly, encouraging them as they struggled against wind and rain, but as the day went on, Matt injured his knee, making it even more difficult. About 30 miles in, Matt's knee was extremely painful, but too stubborn to stop, he carried on until he literally could walk no further at 36 miles. The lovely Bex decided to finish the trek on her own, and completed the full 40 miles, meeting Matt at the finish.

The pair did incredibly well and their sheer determination and motivation shone through on a very miserable grey day. They have raised a staggering £1,432 between them, and if you would like to sponsor their fantastic efforts, you can do by going to www.justgiving.com/trekkingfortor.

Well done Matt and Bex - a fantastic fundraising effort!

Emily speaks at the ETCO conference

2010-10-01T13:24:00.003+01:00

From 24 - 26 September, the UK hosted the European Transplant Coordinators Organisation (ETCO) conference for the first time. It was hosted at Cardiff City Hall, and took 2 years to plan. The 500 delegates included Transplant professionals from across the globe, all attending to hear lectures on the latest developments in transplantation and organ donation.

LLTGL had been approached to provide a speech as part of the Opening Ceremony on the Friday, and so Emily was sent along to present the perspective of both a transplant recipient, and a charity campaigner.

Emily's speech was 30 minutes long and during that time she talked about her own transplant story - her fight for survival, life prior to transplant, and life as it is now - and about LLTGL - our aims, our work, our mission.

At the end of the speech Emily showed our LLTGL slideshow, and as she left the stage after thanking the assembled delegates for all the incredible hard work that they do, she received a standing ovation.

It was a hugely successful talk and we look forward to working with members of ETCO again soon - well done Emily!

The week that was...National Transplant Week

2010-09-14T10:51:00.002+01:00

It was a while ago we know, but we’ve been so busy we haven’t actually had time to blog about what LLTGL got up to!

As always, our biggest contribution to NTW was our PR campaign. Some of you kindly shared your stories with us, so we could, in turn, get them out to regional and national media outlets to raise awareness about Organ Donation and the wonders a Transplant can bring

We had 10 PR volunteers this year, and with the help of PR consultant Sarah Milne, between them they managed to get their story out to over 8.5 million people. Hits included Victoria Tremlett and Jen Grannell in the Mirror, Victoria Glen and Gerard Falsey in the Glasgow Evening Times, Lucy Spaull in the Richmond and Twickenham Times, and our very own Chairman Emily in Boots Health and Beauty Magazine.

We are hugely grateful to everyone who has shared their story with us at any point in time; statistics are helpful, but hearing a real story, a real example of just how important Organ Donation is, can be so much more powerful. If you would like to help us by sharing your story, please get in touch via the contact page on our website.

To help maximise online awareness, we had an image designed which we hoped a few people would share on their facebook pages and twitter profiles. The concept was far more popular than we could have hoped, and literally hundreds of people had changed their profile pictures to the image (below) by the middle of the week.

Throughout NTW, we were tweeting key facts about organ donation and transplantation. Our fabulous Ambassador Victoria Tremlett worked extremely hard sending tweets to celebrities, and got a fantastic response. Thanks to Tor, the LLTGL tweet team, and other supporters, celebrities promoting NTW included Duncan Bannatyne, Jason Manford, Lorraine Kelly, Sarah Brown, India Knight, Bill Bailey and Sheridan Smith.

The celeb supporters’ combined followers (therefore people who can see their tweets) add up to over 1.8 million, so a fantastic result! Hundreds of you also retweeted our messages (our most popular one was retweeted 167 times), and we are hugely grateful to each and every one of you for helping us spread the word.

A massive thank you to every single person who helped us support National Transplant Week - it was a huge success and really pushed Organ Donation into the spotlight. We're already looking forward to next year!

Fantastic Fundraisers: Team Jess

2010-09-13T17:59:00.013+01:00

We've had some incredible fundraising efforts going on this week, here's the first one that took place on Sunday 5th September.

Trustees Emily and Holly who were part of Team Jess

You may remember this blog which highlighted the achievements of our lovely Advocate Jessica Wales, who managed to walk a fith of the Adidas Challenge 5k to raise money for LLTGL and for Kings College Hospital. We were all so proud of her, and she was optimistic and hopeful that she would be able to do the entire course this year, with her new lungs.

Sadly, our lovely Jess passed away in January this year following severe complications which her body was not strong enough to cope with, having waited and fought for over 4 years.

This September, a group of Jess' friends, along with her wonderful mum Jackie, took on the Adidas Challenge in Jess' memory. The team were dressed in bright pink, and it was an emotional day for all involved, and there were tears and hugs all round across the finish line; tears of pride for the achievement, and tears of sadness at the fact Jess should have been there.

Jess' family and friends aim to continue Jess' work for LLTGL in her memory. It is a testament to Jess' incredible hard work, determination, and passionate spirit that she continues to save lives, even after she has gone.

They have raised over £800 through combined Justgiving pages and offline donations so far but you can still sponsor Team Jess at http://www.justgiving.com/teamjess.
Jessica Wales: Gone but never forgotten, and missed every day.

I Hope You Know

2010-09-06T19:38:00.002+01:00

The band The Floe are loyal supporters of us here at Live Life Then Give Life so it’s about time we gave them a huuuuge shout out!

They are a fantastic quartet (soon to be duet) who are based in Essex, but just as the band were due to start recording the album Sarah’s (who is the lead singer of the Floe) long-term boyfriend was taken seriously ill. Needing a kidney transplant to save his life, Sarah selflessly donated one of her own kidneys to Paul in November 2008. The operation was a complete success.

This life changing experience gave the whole band an incredible opportunity to reflect and re-focus, and they have emerged stronger, more appreciative and more determined than ever to make music which matters on every level.
In November 2009, almost a year to the day since Sarah & Paul’s operations, Sarah launched a personal campaign aiming to get as many people as possible to sign up to the NHS Organ Donor Register. Sarah's campaign, called 'I Hope You Know' was backed by the release of The Floe’s debut single, also called ‘I Hope You Know’, with all profits donated to us here at Live Life Then Give Life!

The launch of I Hope You Know gained substantial national coverage on ITV News, Channel 4 News, Channel 5 News and The Mail on Sunday, amongst many others. The song was also recently played on Radio 2 by legendary Bob Harris! To read more about the campaign and to download the single please visit www.ihopeyouknow.co.uk

The campaign has so far raised £1900 for us! The Floe are amazingly talented, Trustee Mandy and Advocate Lisa met the band at the recent event T’s in the park as they preformed live. Keep an eye out for them as we have a feeling they are going to get bigger and better! Check out their website for more info on upcoming gigs: www.thefloe.com

Thanks guys for your ongoing support, you rock!

Marvellous Matt

2010-08-01T15:21:00.001+01:00

There has been a huge break in me updating you all about the tremendous trustees so my sincere apologies but we had lots to shout about in the mean time such as, the new t-shirt designs (coming soon, just waiting for stock!) important business on our stance as presumed consent and our inspirational life stories during National Transplant Week. I just want to take this opportunity to thank our supporters, without whom we wouldn’t be able to continue the work that we do.

So up next is the marvellous Matt Coyne, he has the fortune or misfortune (whichever way you look at it) to be the only chap working alongside us ladies! Born across the pond in 1981, Matt moved to England in the summer of 1994. Always filled with a passion for water sports and other such activities, Matt thinks nothing of throwing himself off heading out in 30knots of wind kitesurfing or travelling the globe for a bit of surfing (just don’t get him to do any sort of bungee jump / skydive!) and is always up for a new challenge!

He moved to Brighton 8 years ago, where he met his now-wife, Rebecca and her best friend Robyn Tainty. This is where Matt first learned of Cystic Fibrosis, what it really means for people who have to deal a chronic condition, and the severe lack of awareness regarding organ donation.

Robyn worked hard in her education, picking up a CF Academic Achievers award at the 2006 Breathing Life Awards. In July 2007, she was the face of National Transplant Week, and was featured in the Sun for LLTGL, helping raise awareness of the plight of those waiting for a transplant. Robyn passed away in September 2007 after two years of waiting for a double lung transplant at just 23 years old. She was awarded a posthumous Masters degree from the University of Sussex in January 2008, having worked hard towards it until the day she died.

When you’re confronted by something affecting someone you care about, it causes you to think of what you can do to help make a difference. This is where Matt first established contact with the LLTGL team, supporting us at events he’s organised, through other various forms of promotion and by helping out at the Laughter for Life gig a few years ago.

Matt’s always had a penchant for pushing himself and sinking his teeth into any project he embarks on. Setting up his own marketing, sponsorship and sales company in 2005, he’s organised various events (including RobFest 2008/09/10 in memory of Robyn), launched magazines and worked on marketing campaigns for international exhibition organisers as well as being a coach at the Horsham Junior Baseball Club.
More recently he played a huge part in the success of the Save Jess campaign and the Save-Jesstival concert, getting to meet Natalie Imbruglia & organising everything from raffle prizes, to the venue to the printing of the tickets – even if he was suffering from tonsillitis at the time!

Matt is always on the lookout for fundraising ideas, and his latest must be one of his craziest ones to date. Along with his lovely wife and two of their friends, Matt will be undertaking the Lyke Wake Walk. They are doing it for one of our Ambassadors Victoria Tremlett and have named it Trekking for Tor! A walk you may say... however this is not a normal walk; it is anything but! The Lyke Wake Walk is 40miles long and they must complete it in less than 24 hours! All the money raised will go to us – Live Life Then Give Life! Please dig deep and show your support to Matt, the team and Tor. www.justgiving.com/trekkingfortor .

If you have an idea for a fundraising opportunity, Matt is the person to speak to, just email fundraising [at] lltgl.org.uk

I am so pleased to work alongside Matt as a trustee and I look forward to being part of some of his mad fundraising ideas in the future. You rock Mr!
Love, Hol

Ts in the Park raises £££ for LLTGL!

2010-07-22T17:00:00.008+01:00

On Saturday 17th July, a music festival entitled T's in the Park was held in Saffron Walden. The turnout was excellent, and a variety of artists performed including Susanna Cork, (who performed at Save Jess-tival) and The Floe (who have donated the proceeds from their single "I hope you know" to LLTGL). Raffle tickets were being sold in aid of LLTGL with some marvelous prizes donated by various companies, and the crowds were able to soak up the music and atmosphere in the summer sun.

Lisa and Mandy, flying the LLTGL Flag!

LLTGL Advocate Lisa attended along with her boyfriend Simon, as did our Treasurer Mandy and volunteer Sarah. Lisa and Mandy were asked to go up onto the stage and say a few words, and the organisers did everything they could to remind people what the event was in aid of and how to sign the Organ Donor Register.

Lisa, Susanna Cork, Ben Cork and Mandy.

Ts in the park raised a staggering £3500 and we are hugely grateful to everyone involved in the event. Our special thanks goes to the Turner family for making us their chosen charity; we really do appreciate your support.

George's Story

2010-07-11T10:02:00.001+01:00

We end National Transplant Week, with the truly inspirational story of 10 year old George Higginson, written in her own words by his Mother, Sarah Higginson.

"I was working my last shift before going to France for our family holiday when one of my colleagues said my husband was on the phone. He was telling me my eldest son George, aged 10, had been knocked off his bike and was being airlifted to the hospital where I work as a nursing sister. I tried to tell myself that perhaps they'd sent the helicopter because I live in a small village, because it was for a child or because someone had exaggerated the facts on the phone when they'd dialled 999. The gravity of the situation dawned on me when I arrived in resus in A&E to hear the doctor calculating the charge to set the defibrillator at and what dose anaesthetic drugs to give.

After a few minutes, he still hadn't arrived so I rang my husband. There'd been complications and they were taking George to Royal Preston Hospital. George had had complications and they'd had to intubate him and stabilise him at the scene before transferring him. I was sat in Preston's A&E resus and they wheeled George in on a spinal board. I just sat there, a few metres away from him, not daring to go near him or listen to what they were saying because it would just confirm what I already knew- that my first born son was no longer really here.

They scanned George's head - the consultant relayed the results to us - I can't really remember what he said, but I think George had 4 separate injuries, any one of which I knew he could die from. Until I told my husband this, he never realised just how serious George's situation was.

George went to theatre so that they could try and monitor the pressure inside his head; they had to remove part of his skull to try and remove the pressure inside his head - we'd have consented to anything just to try and save him. I was 19 weeks pregnant at the time, nauseous and exhausted - I kept falling asleep, then waking and having to relive the nightmare again and again.

When stable enough, George was transferred to Manchester Children's Hospital ICU - we followed behind in a police car, driven by our wonderful family liaison officer. He must have no sooner got into bed after spending several hours at Preston with us, that he got called out again to drive us to Manchester, where he stayed for most of the following day to support us.

Every time someone updated us, the news was worse, until that final, inevitable conversation to tell us that George was brain dead. From hearing his scan results at Preston, my husband and I had talked about donating George's organs. I was worried my husband would refuse - he always said he hated the thought of post mortems, so I thought he may feel the same about organ donation. He'd remembered a conversation George and I had had whilst watching a medical programme on TV where they were performing an organ transplant - George couldn't understand why people wouldn't donate their organs.

Thankfully, my husband didn't refuse, and something wonderful was able to come out of this awful tragedy. We met 2 wonderful transplant co-ordinators - Lee & Lisa- who talked us through the process; I never felt rushed or forced to do anything I didn't want. They promised me they'd take good care of George during his organ retrieval and afterwards. My brother in law went to 'Gap' in Manchester to get George some new clothes to be dressed in afterwards - I didn't want him laying in the hospital mortuary in a shroud or a pair of hospital PJ's - he'd always been such a trendy boy !

The hardest things were telling George's brothers Henry, who was 8 at the time, & Max, then aged 3 that their big brother was going to die. It was the only time I've seen Henry cry about George's accident - I just wished I could have done something to make it easier for him and protect him from this trauma. And saying goodbye to George. He was moved to a side room. My husband, myself and George's brothers went into him. I remember holding and stroking his hand and there being no response at all - just like someone who's had a dense stroke.

Walking out into the Manchester sunshine to be driven home, knowing I'd never see or hear my son again in this lifetime, there aren't words to describe it. Only 10 days prior to his accident we'd all been in London celebrating his 10th birthday - we'd had lunch at Gordon Ramsay's Boxwood Cafe restaurant (George's choice!) and he'd spent his birthday money in the Apple shop on Regent Street on an IPod Touch; the photo of him is from the Ferrari shop next door on his birthday.

The morning after, my husband took a call from the transplant co-ordinator. He came upstairs sobbing and all I could think was that they hadn't been able to use any of George's organs - all this pain and suffering for nothing. Quite the contrary - the transplant co-ordinator said George's organs were beautiful and gave us brief details of who had received what. I cried what I can only describe as tears of joy - I was so proud of what my son had helped make possible. I thought of the recipients getting their calls and what must've been going through their and their loved ones' minds.

People say we were brave to make the decision to donate George's organs - we weren't brave at all; we were grateful we were in a position where we could bring some joy out of our situation. There isn't a day goes by when I don't think of my beautiful, clever, kind loving son, but also of the people he's helped - they bring me so much comfort and pride. My letters from the transplant co-ordinators and from one of the recipients and their family are very treasured - I get them out from time to time to read. If anyone else ever finds themselves in a similar situation to us, I'd urge them to donate their loved one's organs - it's decision I'm sure will bring them a great deal of comfort and one that they'll never regret."

Please, think about it, Talk about it, Do something about it.

Sign the Organ Donor Register - in memory of George and all the other wonderful Donor Families that have given the gift of life.

Introducing Kirsty!

2010-07-10T10:49:00.001+01:00

What a fantastic time, during National Transplant Week to introduce the newest addition to our Advocate Team, Kirsty Geddes.

Kirsty was diagnosed with Cystic Fibrosis at nine months old. It wasn’t until Kirsty was 13 that her condition started to deteriorate. She began having hospital admissions for Intravenous antibiotics which would mean a two week stay. At first this was two to three times a year but as time progressed it became more often and eventually by the age of 16 she was able to administer her IV’s from home.

Kirsty went to university at 18 but ended up becoming extremely ill and at 19 had to drop out. At this time, her Doctor and CF team warned her that if she didn’t stop work and pay attention to her health, she wouldn’t be here in a year’s time. This was a life changing moment and Kirsty gave up work and started focusing on her health. Unfortunately the damage had been done and her lung function had dropped to 35% - just a third of a normal lung capacity of someone else her age.

In February 2008, Kirsty suffered a pneumothorax (collapsed lung). Kirsty had a further two collapses and it was around this point that transplant was becoming a reality. Following the pneumothoraces, her lung function was now sitting at just 25% and Kirsty was told that if her lungs continued to collapse there would be very little the doctors could do for her; her only hope was to get onto the transplant list.

Kirsty’s transplant assessment was done at Freeman’s Hospital, Newcastle, and took place in February 2009. After three days of rigorous tests Kirsty was told that she was an appropriate candidate for transplant, and put on the active waiting list.

Life waiting for transplant wasn’t easy but Kirsty took every day as a gift and pushed herself to live, studying hairdressing in Coatbridge College where she was awarded an A. During her attendance at College Kirsty required 24hr oxygen, a non invasive ventilator, four nebulisers a day, three sessions of physio and around 60 pills a day.

Kirsty waited for eight months but then in November 2009, she got the call from the Transplant Co-ordinator at Freeman’s Hospital to let her know that they had some suitable lungs. Kirsty’s operation took seven hours and she woke up some ten hours later. Exactly three weeks after her transplant, Kirsty was strong enough to go home and says she hasn’t looked back since.

Kirsty is a vibrant and headstrong lady, with a love of dancing and glamour, and a fiery attitude towards life and its obstacles. Kirsty simply says that she always wanted to be busy and not let CF get in the way of her life.

Welcome aboard Kirsty - we look forward to working with her and know she will be a great asset to the team.

You could be someones hero, sign up to the Organ Donor Register now.

Molly's Story

2010-07-09T10:13:00.009+01:00

The next story in our special blogs for Transplant Week, is 18 year old Molly Smith's story. Here she tells us first hand, her journey to transplant and beyond (written March 2008).

Molly received a multi-organ transplant (small bowel, liver and pancreas) at the age of 16.

"When I was just 6 months old I was suddenly taken ill and it was discovered that the majority of my small intestines had telescoped in on themselves and died due to restricted blood supply. After surgery to remove the affected bowel I was only left with 30cm of small intestine, and as a result I was put onto intravenous feeding, called TPN (total parental nutrition), administered through a central line leading directly into my heart. The TPN I received contained all the nutrients I needed, so I didn’t eat anything at all by mouth. As I grew up I easily adapted to living like this as it was all I had ever known. And as my TPN only had to run overnight I could attend school during the day, and in most other respects led a ‘normal life’. My health was good, and I only occasionally had to miss school for hospital appointments.

However, when I was 14 my family and friends began to notice I was jaundiced, and over the following months this became more obvious. I also became very lethargic and regularly suffered from severe nosebleeds. After tests at different hospitals it was discovered that I was suffering from TPN related liver disease. TPN often causes liver disease in babies and toddlers, but it was very unusual for it to cause problems in someone who had been on TPN as long as I had. The only chance I had was a multi-organ transplant (small bowel, liver and pancreas). After a two week transplant assessment at Birmingham Children’s Hospital I was put on the transplant list, just before my 16th birthday.

Back at home waiting for a transplant, my health deteriorated further. After 7 and a half weeks waiting I attended a clinic where I was told that there was a national shortage of donors, so I could be in for a long wait. Just a couple of days later the call I had been waiting for came. My dad drove us to the hospital that night and then at 8am on Sunday 19th November I went into theatre for my transplant. I was in theatre for 12 hours, in intensive care for 5 days, and in hospital for 12 weeks. The 12 weeks I spent in hospital weren’t straightforward as different complications meant I had to return to theatre more than 10 times. But eventually in February 2007 I returned home.

Since I returned home my health has continued to improve. In the 2 years since my transplant I’ve experienced no rejection. I returned to school full-time 9 months after my transplant and most of my new friends have no idea I’ve been ill. My medications have reduced from 14 to just 5. After my transplant my feed was changed from TPN (which went straight into my heart) to enteral feed (which goes into my stomach and digestive system), as I now have enough small bowel to absorb nutrients. Since I came home from hospital I’ve learnt to eat and gradually built up my eating and decreased my enteral feeds, until my eating got to a ‘normal’ level and I could stop the enteral feeds completely.

I feel like my transplant has given me a future as I know without it I wouldn’t be here now. My transplant has enabled me to do so much and last month I went on a school trip to Japan, which would never have been possible before. I’m eternally grateful to my donor and her family."

Monica's Story

2010-07-08T10:40:00.002+01:00

Continuing with our week of Life Stories related to Organ Donation and Transplantation, we now hear Monica Hackett's story, in her own words*.

A day in the life of a Donor Transplant Co-ordinator

I work primarily in one large Critical Care Unit and am responsible for providing professional support to the families of potential organ donors and to my medical and nursing colleagues. The aims of the role are to ensure the identification and referral of all potential donors and a skilled professional approach to all families where the option of donation is possible. Every day has been different since taking up the post.

07:45: I arrive on the unit and liaise with the nurse-in-charge regarding any potential patients. On this day I am informed about a patient’s deterioration overnight and who is now presenting with fixed, dilated pupils with no further planned neurosurgical input. The nurse explains that the family is not present but her brothers and sisters are expected at the unit midmorning – they have been informed overnight about their sister’s deterioration. The patient is divorced with two young children and her ex-husband has been in touch but is not planning to visit. I take the opportunity to review the notes and await consultant review of the patient. At this time I also inform my DTC colleague on call of the potential donor. I defer any planned desk-work until another day.

11:00: I join the ward round, where it is decided that the patient fulfills the criteria for brain stem testing and that tests will be carried out this afternoon. The consultant is happy that we speak to the family together regarding the tests. The nurse asks for advice about patient preparation and we discuss routine blood tests and the equipment required for testing. At this point I also suggest contacting the NHS Organ Donor Register, which the nurse does, and we discover the patient has recently registered when changing her GP.

12:00: The family arrives and the nurse gives a brief update on the patient’s condition and introduces myself as a specialist nurse. Following introductions, I prepare the counseling room and the consultant. I and the patient’s nurse begin the process of reinforcing the prognosis and introducing the subject of the proposed tests. The family is understandably upset but appears to grasp the gravity of the situation and the implications of the brain stem tests. The consultant takes his leave, having given a time for the proposed tests. I remain with the family and reinforce the information. At this point, they express their concerns about communicating the information to the patient’s ex-husband and their young children, as family relations are strained. I offer to speak to the gentleman over the phone and the family gratefully accepts.

13:00: Telephone communication is difficult and although the husband understands what the outcome will be he does not wish the children to see their mother again in these surroundings. I offer some simple suggestions on breaking the bad news to the children and suggest they may want to send some personal keepsakes to be with their mother. The husband thanks me for taking the time to call and will consider my suggestions. I relay the outcome of the conversation to the family who are relieved at the effort that was made. Time for some lunch, to recharge the batteries.

14:30: The first set of tests is completed and confirms the clinical picture. The consultant and I break the news to the family and state that the next set of tests will be undertaken shortly. The family is distressed and wishes to spend some time at the bedside.

15:30: The second set of tests are done and we again approach the family. I have informed the consultant that the patient is on the register and he plans to use this to direct his conversation. The coroner is informed and raises no objection to donation. The consultant then sensitively explains that the tests have confirmed death and we wait while the family absorbs the information. After a few minutes they then ask what happens next. At this point the consultant explains that organ donation is an option and in our care for these patients we routinely try to ascertain what the patient’s wishes were by accessing the register. He confirms that the patient had recently registered with a wish to donate all her organs. The family is not surprised and says it was in her nature to be a giving person. They wholeheartedly concur with her wishes and want donation to take place. The consultant thanks them for their consideration and offers my services in an explanation of the process. The family listens to the detail and asks specific questions regarding timescale and when the patient’s body can be released home.

16:30: The family return to the bedside and I take the opportunity to contact my DTC colleague on call. She has been awaiting the call and will be on site within half an hour. The family is exhausted and keen to return home to break the news to the patient’s mother. The patient’s sister is the nominated next-of-kin and she takes time to complete the consent form and offers further information for patient assessment. My colleague arrives and I introduce her to the family, explaining her role for the rest of the day.

17:30: The family says their last goodbyes and thanks the staff for our support before taking their leave. As my colleague reviews the patient information I return to the bedside, offer advice on donor management and complete the assessment.

18:30: The patient is registered with UKT and the offering process begins. My colleague continues the process and I go off-duty, reflecting on a sad day, but satisfied that the protocol in place had worked in managing this patient and her family.

A fascinating and detailed account of a day in the life or a Donor Coordinator; why not share this with friends and family to give them more of an insight into what happens behind the scenes?

*Source: NHSBT

Oliver's Story

2010-07-07T10:34:00.004+01:00

Sadly not all stories have a happy ending.

Our next story that we want to share during National Transplant week is that of Oliver Faulkner. This story was written by Ollie's mum, whilst he was waiting for his transplant.

Oliver was born in June 2000. He was born with posterior urethral valves and severe gastro oesophageal reflux, and only 1 of his kidneys functioning. I knew at my 20 week scan that there was going to be some problem with his kidneys but nothing could have prepared us for the traumatic 8 years he was about to suffer.

Posterior urethral valves are an obstruction in the urethra, making Oliver unable to pass urine. All the problems Oliver was suffering contributed to the deterioration of his remaining kidney. He had many operations to try and correct these and to try to stop Ollie vomiting and also increase the size of his bladder to enable him to be catheterized.

After many more operations for feeding tubes and catheters by the time Ollie was five it was evident that he was going to require a kidney transplant. We were referred to the Evelina Children’s Hospital and the team did everything in their power to keep his kidney functioning but unfortunately his stomach and gut deteriorated so badly that they were left with no other choice but to remove his only kidney. This left Oliver without any kidneys, consequently he is now on haemodialysis, which started at four days a week but had to be increased to six to keep him stable. Oliver was listed for a transplant in March 2008 and has now been waiting for 11 months.

Ollie has such complex medical needs which he accepts with such bravery. Last year, after a six month stay in hospital when his gastrostomy had to be removed because of infection, his gut and bowel problems took over. It was an uphill battle and the decision had to be made to stop feeding Ollie and he was started on TPN – total parenteral nutrition. This is an intravenous feed given through a Hickman line placed through one of the large neck veins straight to the heart.

So this is Oliver’s life at the moment, he has to be at the Evelina on dialysis every day, except Sundays, he is on TPN twenty four hours a day without any breaks. This means that when he goes out, to the park etc., he has to carry a heavy backpack with his pumps in it. He is on twenty medications a day, one of which he has to have two hourly, day and night to keep his blood sugars stable. Oliver, of course, cannot go to school and receives all his education at the hospital. As you can imagine, after reading this, our lives have not been easy. Ollie is such a wonderful boy, he accepts every new procedure with fortitude and bravery, which we can only wonder at. He is a delight and an inspiration to us all. He desperately needs, and deserves, a kidney transplant to give him a better quality of life.

Gorgeous little Oliver ran out of time on Tuesday 6 October 2009. He fought hard for two years but sadly that life-saving call never came.

Oliver's Mum, Lucy, is supporting us during National Transplant Week appealing for more people to sign the Organ Donor Register, read an interview with her, here.

You can make a difference to people like Oliver. Over 10,000 people across the UK currently need an organ transplant, 3 people die everyday because that transplant didn't come in time.

Think about it, Talk about it and do something about it by signing the Organ Donor Register.

Victoria's Story

2010-07-06T09:25:00.004+01:00

Next up in our Life Stories week is our lovely patient ambassador Victoria Tremlett, who campaigns tirelessly for people to add their names onto the Organ Donor Register.

"I was diagnosed with Cystic Fibrosis (CF) when I was 2 years old. There was no history of CF in our family and my parents knew absolutely nothing about it. It must have been so difficult for them to be thrust into the scary world of hospital appointments, survival statistics, nebulisers, physiotherapy and the million other aspects that make up having a daughter with CF.

During my childhood I remained fairly well. My mum had got me into a good routine with all my treatments right from the beginning and explained how important it was to do everything to keep myself well. By the time I reached my teenage years I had started to feel the bodily effects of my CF. I would find myself becoming breathless quite often but being fiercely private I always managed to hide my symptoms from my peers.

I gained 10 GCSE’s and moved on to Sixth Form College but was really starting to struggle. I would spend my free periods at home, get lifts to and from college whenever possible and arrived early to class so that I could catch my breath before my friends showed up. Climbing the stairs at college was a killer and despite only living 10 minutes away the walk home would regularly see me gasping for breath and having to make several stops on the way. I would be speechless by the time I got in and barely able to breathe.

Things came to a head on December 15th 2006. I was having a particularly bad time health wise and had been forced to take some time off work, it was my first day back and I was determined not to let them down.

As I started walking I knew things weren’t right. I collapsed en route; it was as though my lungs had completely shut down. I was driven to hospital, placed on oxygen and given intravenous drugs to stabilise my condition. It was a very scary time for me as I had never felt so weak, and out of control before. I felt like I was trapped in a body that wasn’t mine, my lung function had crashed to 23% where it has remained ever since. I returned home after two weeks but my lung function did not improve. I instinctively knew that life wouldn’t return to normal, I began using oxygen 24/7 and a wheelchair to go out and about.

I was placed on the active transplant list on the 9th July 2007 and have now been waiting over two years. I had one false alarm back in March '08 but unfortunately the lungs weren’t good enough to use.

Every aspect of my life is affected by my need for new lungs, even the smallest tasks such as getting dressed leave me exhausted. Emotionally, I can’t begin to describe the effect my situation has on both me and my family. There are days where I just feel overwhelmed by my situation. It is as though my life is on hold.

I never forget the fact that when my chance comes it is because someone else has lost their life. It's not something I take lightly in the slightest. The thought that my chance may never come is just heartbreaking. On the other hand being on the list gives me a huge sense of hope, a beacon of light, that things could get better, and that is the thing that pulls me through each day."

Thank you for sharing your story and for your continued work for Live Life Then Give Life Victoria, we all hope that special phone call isn't too far away.

Love x

Paul's Story

2010-07-05T09:00:00.003+01:00

As it's National Transplant Week, we thought we'd take the opportunity to share some amazing stories of people who are affected by Organ Donation or Transplantation.

First up is one of our supporters Paul Kirsop; he shares his story in his own words in the hope it will encourage more people to sign up to the Organ Donor Register.

I am 32 years old, I live with my partner Ruth and two daughters, Jennifer aged 6 and Emma aged 5. I was 27 when I was diagnosed with C.O.P.D, which resulted in me requiring a double lung transplant.

In January 2010, I received my third and final call. I just had a feeling about this one, I knew this was it. At this point I had been waiting around 20 months for a donor, I was on oxygen pretty much 24 hours a day and my lung function had decreased to 17%. I was unable to do things for myself, even getting from one room to another was exhausting. Life had turned into a day-to-day struggle. My daughters kept me going and gave me hope as I found myself saying to them “WHEN Daddy gets better”. I dreamed of running around the garden with my girls and spinning them round like dads do, having a good game of snooker and even putting my own socks on!

The day of my call I was at home on my own; Ruth and the girls were having a day out. I was playing on my playstation when my phone rang. I made my calls, got my bag together and waited for my brother, Stephen to take me to the Freeman Hospital. When I look back now it all seems so fast.

Upon arrival at the Freeman Hospital, I was informed it would be 4-5 hours before we would find out if it was all to go ahead. As I waited for Ruth and the girls to arrive to say my goodbyes I had this sure feeling this really was it. Someone had given me a second chance. It was the most emotional time of my life saying goodbye to my girls, and then having to watch them walking down the corridor wondering if it would be the last time I see them.

Shortly after this I was prepped for theatre. And around 10:30 pm I was told it was definitely happening and was in theatre for 12:30 am. Seven hours later I was out of theatre and in I.C.U. I woke up two days later; I remember my coordinator telling me I’ve made it through the other side and a huge sense of relief surrounded me.

On the third day I was up on my feet doing exercises, on the fourth day I was off the ventilator and out of I.C.U. It was a new, wonderful sensation; I was actually breathing on my own. It was an amazing feeling to be breathing pain free, what I’d be waiting for, for so long. It has given me an altogether different meaning of the word appreciation as words cannot describe how thankful I am to my donor and donor’s family. They have not just given me my life back but Jenny and Emma a Daddy back, Ruth her partner back and a chance for me to watch my two little girls grow up.

Ten days after my transplant it was my 32nd birthday, it was the first time I got to see Ruth, Jennifer and Emma since I said my goodbyes for theatre. The nurses had secretly arranged a little party; I had been told children weren’t allowed to visit so it was a lovely surprise and a great boost for me. Two weeks later I was home; I had made an amazing recovery.

It was great being home and having a new beginning but at the same time I was extremely nervous without my lifeline, having to take nebulisers every few hours and oxygen tubes following me around. I had the support of my oxygen for so long, it was as if I had been set free. It did not take me long to get used to it though and was soon able to start living my life again. I had been given a second chance and plan to make the most of it.

On the 26th of May 2010 I was already living the dream as I played a great snooker hero of mine, Jimmy White. It was in support of the Bobby Robson cancer foundation, raising £4,700 on the night. It was so surreal for me I could not believe how lucky I’ve been , 4 month previous I couldn’t manage a frame of snooker without exhaustion, now I was playing at ease with one of the greatest and beat him!

This is my story, if it had not been for my donor it may have had a different ending, this is why organ donation is so important. There are many others out there like myself who are still waiting. Hero’s are not just firemen, policemen and surgeons but in every walk of life, anyone could be a hero and save lives. You could be one just by signing the organ donor register. You can do it online and it only takes a minute.

If you want to see the amazing contrast take a quick look at Paul's story from when he was waiting for his transplant here.

Thank you Paul for letting us share your story.

Four quick and easy steps to support National Transplant Week.

2010-07-04T12:00:00.000+01:00

1. Tell as many people as you can about it!
Mention in on Facebook, tweet about it, put it as your signature at the bottom of your emails just for this week....just a few ways of spreading the word.

2. Have a heart to heart with your loved ones.
How many of us have just never quite found the right time to chat to our families about our wishes? Now is the perfect opportunity; it's National Transplant Week so that's a great conversation starter in itself! Check out NHSBT's website for more info and a Heart to Heart meal pack!

3. Copy and repost this blogpost, or direct your friends this way.
You can help us spread the word and reach more people by doing this, so share away!

4. Make sure you have signed the Organ Donor Register!
Haven't got round to it yet? Click here to sign up right now; it only takes two minutes to pledge to leave behind the most important legacy of all; the Gift of Life.

National Transplant Week starts tomorrow!

2010-07-03T18:11:00.004+01:00

Tomorrow marks the start of National Transplant Week, and a whole host of awareness-raising activities will be happening throughout the week.

This year's theme is Heart to Heart. NHSBT are encouraging people to "Take the time this week to have one of the most important Heart to Hearts you can have and help us raise awareness of the NHS Organ Donor Register."

You can find out more about NTW, what will be going on round the country, and how you can get involved by clicking here. There's even a pack to help you hold your very own Heart to Heart meal!

For a quick and simple way of showing your support for NTW, you can download LLTGL's specially designed image (at the top of this post) to use as your facebook profile/on your blog/on your twitter page/anywhere else you can think of! Click here to do so.

Are you doing something this week to raise awareness? If so, we'd love to hear about it, so get in touch! Watch this space for news and pictures demonstrating what we get up to. Let's work together to make this the best one yet!

Some very positive news!

2010-06-28T09:18:00.003+01:00

Rich taking his first stroll outside with his new lungs!

You may remember this blog, which was about Rich's lovely email he sent us after receiving a Robyn's Rainbow. Rich was waiting for a double lung transplant (needed due to Cystic Fibrosis) and had been struggling a great deal. He had been in hospital for two months, able to do very little at all, and reliant on a non-invasive ventilator to keep his exhausted lungs going.

You can imagine how delighted we were when we were told that Rich had been called for transplant. That was almost two weeks ago and we are very pleased to report that Rich is progressing incredibly well! He is now out of ICU and settled on the Transplant ward, and on Saturday, took his first walk outside the hospital to breathe in the fresh air with his new lungs!
We're incredibly pleased for Rich and very much hope that his recovery continues in a smooth and positive manner.

50% of people waiting for lungs like Rich die before suitable organs come through, so for every wonderful story like this, there is one with a much sadder ending. This is why we need to keep pushing, keep raising awareness, and keep encouraging people to think about it, talk about it, and do something about it.

Want to help us help more people like Rich? Why not email this blog link to a friend/colleague/family member? If you've been inspired to help save lives after you're gone, click here to sign the Organ Donor Register.

LLTGL gets Ploinked...

2010-05-29T12:54:00.003+01:00

Ploink! is a great new website that offeres you the chance to donate small amounts of change to the favourite charities of your choice.

It means you don't have to climb a mountain or run 1000 miles to be able to contribute to your favourite charity (ahem, LLTGL) but you can add as much or as little as you like! It's just like having a collection tin outside a supermarket...it's as simple as that!

Register (it's really easy) at their site, www.ploink.co.uk and search for Live Life Then Give Life under the charities page and then just start collecting!

Money raised from ploink! will go towards our Robyns Rainbows initiative, which aims to bring a little rainbow, a beacon of hope, (in the form of a balloon) to people in the transplant community. It also reminds recipients that they are being thought of, and that they are not alone. Just read how greatful Richard was when he received his recently here.

If you know someone that you'd like to nominate for a Robyn's Rainbow, or to find out more about the project, please visit http://www.lltgl.org.uk/projects/robyns_rainbows/

Amazing adventure day up for grabs!

2010-05-24T21:37:00.002+01:00

Not up to much this weekend? Fancy a day of fabulous adventures and fun including canoeying, gorge scrambling and jumping down a waterfall!? You could be doing all this in the beautiful Lake District this Sunday!

Pop over to ebay now to bid on this amazing adventure experience. This is a 24 hour bid only so hurry on over!

Can't make it but think it sounds rather awesome? Why not share the link with your online friends? http://cgi.ebay.co.uk/ws/eBayISAPI.dll?ViewItem&item=130394068287

Don't forget you too can raise money for LLTGL via ebay; click here to find out how.

x

LLTGL's stance on presumed consent.

2010-05-21T11:07:00.003+01:00

Here at LLTGL, the question often arises as to why we are not actively pushing for an opt-out system for organ donation. This is a brief explanation of opt-out and where we stand on the issue.

What is opt-out?
An opt-out, or presumed consent system, presumes that everyone wants to donate their organs unless they have stated otherwise. As it stands at the moment, it is presumed that you do not wish to donate your organs unless you state otherwise (i.e., sign up to the Organ Donor Register). If you have not signed the Organ Donor Register your next of kin would need to be consulted as to what your wishes may have been, should you ever be in a position to be an Organ Donor. Various transplant-related groups are pushing quite strongly for the UK to change its system to one of presumed consent.

What is LLTGL's stance on it?
LLTGL are not currently campaigning to change the UK system to one of presumed consent. This is for a variety of reasons.

At first glance, there is reason to assume that changing to an opt-out system would solve the organ shortage in the UK - though on closer inspection it is much more complex than this. The current Transplantation system in the UK is undergoing a huge overhaul, triggered by the release of the Organ Donor Taskforce report in January 2008. The report identified 14 key points within the system which need attention and reform, and started working on these immediately. One of the key points identified is infrastructure; we do not have the capacity to deal adequately with increased levels of organ donation. It is vital that this key point is one of the first to be rectified, and steps are already underway to improve things. You can read the full report here.

A major concern for us are the myths and misconceptions which surround Organ Donation. Until people are better educated we do not believe that radical changes to the law would be effective as people would still be making decisions based on erroneous information.

One of the leading countries in the world as regards Organ Donation rates (relative to population) is Spain. Spain does have an opt-out system, however Dr Rafael Matesanz, President of the Spanish National Transplant Organisation, states that the legislative shift to presumed consent is not what improved their donor rates:

"During the early 1990s we had a 30% refusal rate, at the moment it's about 15%," Dr Matesanz says. "Many countries try to increase organ donation through legislation. But a change to presumed consent doesn't improve the donation rate". (Read the full article here.)

If the UK changed to an opt-out system, it would be called a "soft" system, where despite the premise being that it is assumed the person wanted to donate their organs, the family would be asked whether they would like donation to go ahead. The family refusal rate in this country is currently 40%, and it could be the case that this would rise since the loved one would not have made an active move to join the Organ Donor Register, leaving the family less certain of their wishes.

For all the above reasons, we feel it is important to focus on improving the current system through attention to infrastructure, education, funding and staffing, before considering any radical changes in UK legislation.

New T-Shirts

2010-05-17T20:54:00.005+01:00

OK all you fab LLTGL supporters, we need your help!

When LLTGL was first launched back in 2006, it was essentially a T-shirt campaign. That was four years ago and the time has come to redesign our T-shirts!

We are down to two designs and this is where you come in; we need you to vote for your’e favourite one and give us any comments and feedback you can think of. Our supporters are always asking what they can do to help and so this is the perfect opportunity to make a difference and get involved.

Here are the 2 designs, leave comments on the blog to say if you prefer design one or design two or head over to our Facebook page and "like" your favourite design there.

This also means that the stock we have left of our current T-shirts is now effectively limited edition, so if you want to buy one, email info@lltgl.org.uk before it's too late!

We look forward to hearing your feedback and, as always, are extremely grateful for your ongoing support.

Love,
The LLTGL Team x

"With a happy balloon bobbling up and down at the end of my bed you can't help but smile and keep fighting"

2010-05-15T20:31:00.005+01:00

We're pretty sure you know about our Robyn's Rainbows scheme, but just in case you don't, here's a reminder of what it is and why we do it. This is written by Rich, who is waiting for a double lung transplant and currently having a very rough time in hospital. We sent him his RR last week and received this lovely email in response.

"I woke from my early afternoon nap to find that a rather large parcel had been left a the end of my hospital bed. After realising that for once it wasn't a box of medication from Pharmacy I got rather excited. With the help of a passing physio we carefully untied the shiney yellow ribbon that surrounded the box and then peeled off the lid. I was slightly confused by the size/weight ratio of the parcel at his point as although big enough to conseal a large Christmas cake, it weighed no more than a bag of prawn crackers from a Chinese takeaway..

Finally we got the lid off, and like a jack in the box, a huge yellow smile bobbled into the room on a balloon. A smile that quickly spread to my face as I realised what had happened and who was responsible.

I was already very much aware of he work that LLTGL do for the transplant community and had read stories of others, like myself that had received a Robyn's Rainbow in the past... and can confirm that the reaction that I felt was exactly what they try to achieve with such a gesture.

The wait for Transplant isn't easy, but to know that people are thinking of you and cheering you all the way means so much. And with a happy balloon bobbling up and down at the end of my bed you can't help but smile and keep fighting.

Thank you and awooga!!"

It's thanks to your ongoing support and fundraising efforts that we are able to keep people smiling and help them keep fighting.

We're keeping our fingers tightly crossed that Rich gets his much-needed call as soon as possible. Do you know someone pre or post transplant that is having a difficult time and could do with a smile? Email info [at] lltgl.org.uk to nominate them for a Robyn's Rainbow! To find out more about the scheme and the story behind it, click here.

Gift of Life Memorial

2010-05-09T23:26:00.000+01:00

Our friends at The Donor Family Network are holding a £250,000 fund raising appeal to create the Gift of Life Memorial at the National Memorial Arboretum in Staffordshire along with other regional memorials across the country.

The new National Organ Donor Memorial pays tribute to those donors and their families who made the gift of life possible.

The Donor Family Network strongly believes that a memorial to organ donors should be funded by the people - those whose lives organ and tissue donation has touched and those who support transplantation in recognition of the kindness and generosity of organ donors and their families.

The Memorial features a butterfly - the symbol of hope and new life and the forget-me-not as no donor will ever be forgotten. The design is surrounded by symbolic benches and provides a focus for donor recognition.

To find out more about the memorial, the appeal and how to donate visit: http://www.giftoflife.org.uk/

Advocate Number 7

2010-05-07T23:01:00.000+01:00

Last but by no means least advocate number 7!

Carol Beckett is a 39-year-old mother from Manchester. She was diagnosed with a rare liver cancer in September 2007 and received part of her brother's liver in a Living Donor Liver Transplant in January 2008.

At risk to his own life, Stephen saved Carol’s life in a ten hour operation and to express her thanks for this wonderful gift, Carol is now an Advocate for Live Life then Give Life, helping promote the importance of organ donation. Carol has worked in the NHS since 1991, and after a career break, has recently gone back to work part time in the NHS as a Senior Information Analyst.

Carol still finds time to fulfill her role as an advocate in many ways such as appearing in the Good Housekeeping magazine to tell her story, setting up stalls to invite members of the public to join the organ donor register and also giving presentations in schools to spread the word.

A couple of weeks ago Carol’s sister Sue also ran the London Marathon raising a massive £2,461.45 for us so far! (http://uk.virginmoneygiving.com/suestrang)

Thank you Carol, your ongoing work and support is much appreciated.

There is a chronic shortage of organ donors in the U.K. and consequently 3 people die every day whose lives could have been saved by a transplant. Carol and indeed all the team at LLTGL want to raise awareness of this plight and want people to talk about it, think about it and do something about it.

Tremendous Trustees

2010-05-05T09:53:00.009+01:00

Holly here, I am now on the Live Life Then Give Life blogging team so you will have the pleasure of my company here every so often – Ok so we’ve talked about our Amazing Advocates and now I’m going to re-introduce our Tremendous Trustees (they won’t blow their own trumpets so I am going to do it for them!)

First off Pops Barham – now where do we start with Pops!

Pops is a Student Paediatric Nurse, studying in the frozen North that is Newcastle-Upon-Tyne. Her links with Organ Donation began when her younger brother Gareth received a new heart at Christmas 2004, after a six-month wait. Since this live changing event for Gareth, Pops has been a fierce promoter of Organ Donation, coming up with numerous (and often bizarre) methods of persuading people — especially students — to sign the Organ Donor Register.

In 2005, she started at University College in the University of Durham, studying English and Theology with Arabic (it seemed like a very good idea at the time!).

In Pops’ second year at Durham, she worked with the Chancellor Bill Bryson in starting his Organ Donation campaign, called 'My Friend Oli'. Bill had started the campaign after meeting Oli Lewington, who Pops finally met after his successful transplant. Targeting the student population, the campaign had great success in Durham, and will hopefully spread to universities across the country soon. For more information, check out myfriendoli.com. This is where Pop’s heart lies, promoting organ donation amongst students through her role as student outreach for LLTGL. (Keep watching this space)

Now Pops has had some strange, bizarre and downright wacky ideas but this just takes the biscuit... Pops is going to run the Manchester Bupa 10k on Sunday for us along with her brother Harry and members of Team Ethan, this would be fine but she herself admits she can’t run and only started training a couple of weeks ago!

Pops acquaints herself with her trainers

She is making progress and all jokes aside Pops is fab and even if she has to crawl across the finish line we at Live Life Then Give Life know that she will complete it as she is so passionate about raising awareness of Organ Donation and raising money for us to continue our work! To keep up to date with her training schedule and how she is getting on click here and to sponsor her visit her Just Giving page here.

Had it not been for the gift of Organ Donation, Pops would be without her brother and this is exactly why she wanted to become a trustee, to keep spreading the word. Well done Pops for your fab work! x

Independent Woman

2010-05-04T20:33:00.008+01:00

Our loyal supporter Holly Cocker featured in the Independent newspaper today. The article discussed her transplant journey, where her best friend Oli donated a kidney to her after she had spent 5 years on dialysis. The headline of the article says it all ‘He simply said, have my kidney. He was my best friend – now he’s my hero’

Other people were also interviewed for the article, each of the people in the article have been part of Holly Cocker’s “Give and Let Live” photography project which promotes the benefit of living kidney donation. When discussing the project Holly said “When I travelled round to meet up with everyone and take their photo there was never a moment of awkwardness. The fact that we had been through the same thing somehow made it seem as if we were old friends. It is hard to put into words, but I instantly felt and understood the connection between the people in every couple I met. The attachment Oli and I have is incredible, amazing. It is like nothing else. He saved me.”

To read the full article click here and to read more about Holly’s project click here.

The article even mentions us at the bottom! Way to go Holly from all at Live Life Then Give Life x

Advocate Number 6

2010-05-03T10:19:00.005+01:00

So onto amazing advocate number 6 Jacqueline Didsbury who is our Scottish advocate, She is 30 years old and lives with her husband Andrew and her little dog Seb.
Jacqueline was diagnosed with Cystic Fibrosis as a baby and as she grew up enjoyed school even though she required lots of hospital admissions. Following her exams she managed to secure a place at Glasgow medical school. Jac graduated with a medical degree in 2002 and is now working as a doctor in Psychiatry, but this wouldn't have been possible without the miracle that is organ donation.

Jacqueline was placed on the transplant waiting list in 2006, being given an estimate of two years to live. She waited two years but that call finally came in April 2008 and she successfully underwent a double lung transplant. Since this day Jacqueline has not looked back.

She has helped with media work in the past but her preference is to speak publicly on Live Life Then Give Life’s behalf. She spoke at Scottish parliament a few years ago and has also spoken within several Churches this year to help increase awareness.

Her big fundraising event last year was her Team Jac event where 160 participants walked 10 miles of the Fife coast, raising over £23,000 for us.

Jac, Seb and our very own Emily during the 10 mile walk!

Jac's current project is looking into setting up stands in university student unions to hopefully sign more people up to the organ donor register.

Jacqueline is a quiet but an extremely focused and determined lady and we are so lucky to have her as one of our “Fab”vocates, thank you for all that you do for us at Live Life Then Give Life and the transplant community!

Update on Rachy

2010-04-27T19:35:00.003+01:00

Hello Everyone,

It's Holly here! Just dropping by to give you an update on our lovely patient ambassador Rachael Wakefield... She continues to progress well after her double lung transplant but it is a long road to recovery and it's not without its hiccups along the way, which is to be expected after such a huge operation!

Rachy is currently fighting an infection (pseudomonas) in her new puffers but the fab transplant team are onto it with strong antibiotics and regular bronchoscopies.

Rachy currently is still on overnight ventilation due to her right lung being a bit naughty but this will hopefully be reduced in time and she will hopefully get the tracheotomy tube out soon too (she will be very happy to be able to finally talk!) The doctors still remain happy with everything and Rachy is keeping the physios on their toes by working on improving her lungs.

I am in regular contact with Rachy and her Mum, they are both in good spirits and are grateful for all the messages of support. You can keep up to date with Rachy's progress on her blog here: http://lungs-for-life.blogspot.com/

Of course Rachy's transplant wouldn't have happened if it had not been for someone signing the Organ Donor Register and their family agreeing to donation. If you want to give someone like Rachy a second chance at life, please consider signing the Organ Donor Register too.

Thank you, x

London Marathon & Manchester 10km Run

2010-04-26T21:10:00.004+01:00

Well, Sue Strang certainly did put in a marathon effort and finished the London Marathon in a very respectable 3hours & 41 minutes and manged to raise over £1500! Thank Sue, you're a superstar!!

In the spirit of all things running, we've still got one place left for the Manchester 10km run in May. Please let matt@lltgl.org.uk know if you're interested in taking part. Closing deadline is Wednesday 28th April!!

We've got some great people together for the 2010 run including LLTGL's own trustee, Pops! Take a look at those taking part on their Just Giving pages below:
www.justgiving.com/mrbrave
www.justgiving.com/popsbarham
www.justgiving.com/tim-gibson
www.justgiving.com/harry-barhamlltgl

Please help out where you can or if you in /near Manchester, let us know and we can see where the Team are to support!

Thanks
Matt

A Marathon Effort...

2010-04-22T18:41:00.002+01:00

Sue Strang is running the London Marathon for LLTGL

Sue is running the marathon for her “lil sis” Carol Beckett, who received a vital liver transplant in 2008. It’s quite an amazing story of how a family pulled together in a time of need. Read more about it on her sponsorship page below!

With only three days to go until the big run, we wanted to wish Sue all the best in getting to the finish line! She's already gone through a marathon effort of raising over £1,000 and you can still help with her efforts at http://uk.virginmoneygiving.com/suestrang

GO SUE, we’ll be thinking of you this weekend!!!

Recording of incorrect data on the NHS Organ Donor Register

2010-04-11T13:19:00.004+01:00

The stories and reports surrounding the recording of incorrect data on the Organ Donor Register are very confusing. The basic important facts are as follows:

- This error only affects people who registered through the DVLA. All those potentially affected have been identified, and are being contacted by NHSBT. Data from their files will not be used until they have been spoken to and details have been verified.

- The error is not that people have been incorrectly recorded as wanting to donate, rather their specific preferences as to which organs they do and do not want to donate have been incorrectly recorded.

- NHSBT says: “There are a small number of cases, 21 over the past six years, where the person has died and their preferences may not have been correctly recorded. In each case the family gave permission for the donation to take place, but it may not have been in line with the individual’s preferences.”

We have issued the following statement in response to this story:

LLTGL are reassured that the issue of data being incorrectly recorded on the Organ Donor Register is being thoroughly investigated. This error means that within the 16 million willing registered donors, there are a number that registered through the DVLA, whose specific preferences have been incorrectly recorded. Those potentially affected have been identified and are being contacted, and any donations that have taken place involving affected parties have done so with the family’s explicit consent.

We hope that the public do not let this error, which is now being investigated and rectified, detract from the importance of giving the gift of life. When considering organ donation, it is vital to discuss your wishes with your next of kin, to ensure that they are aware of your exact preferences.

Click here to read the full statement from NHSBT. Click here to download and read the full statement from the Donor Family Network.

BTS Congress 2010 - A lighter side

2010-04-06T09:02:00.005+01:00

The BTS Congress was not all work and no play and LLTGL were pleased to raise awareness by providing t-shirts for 4 of the teams in the 5 aside Football Tournament between North and South Thames Transplant Centres!

There were 4 teams each from North and South Thames comprising people from all aspects of the transplant profession - researchers, scientists, surgeons et al. The North Thames teams were organised by Mr Bimbi Fernando (Royal Free Hospital), Mr Roberto Cacciola (Royal London Hospital) and Mr Vassilios Papalois (Hammersmith Hospital) whilst the South Thames teams were organised by Mr Geoffrey Koffman.

We didn't get any scores but, judging by the happy faces, and a few trophies, a good time was had by all!

Back row, left to right :
Bimbi Fernando, Samir Damji, Vassilios Papalois, Ben Lindsay, Indy Singh, Martin Drage, P Chowdhury, Chris Koffman, Geoff Koffman, ?, David Game, Jonathan Olsburgh

Bottom row left to right:
Stephen West, Maura Appleby, Janet Lee, Jeremy Crane, Joe Burke, Karim Hamaoui, Gregor Bartel, Jack Galliford

British Transplant Society Annual Congress

2010-04-06T08:46:00.005+01:00

Hi all, it's Mandy here with my first blog, a very overdue update on LLTGL's presence at the British Transplant Society (BTS) Annual Congress which washeld in Kensington, London from February 17 - 19th.

This annual event was the 13th since the society was formed in 1972 for all professionals working in the transplant field from nurses to scientists to surgeons and ethicists, the Congress also draws interest from patients and charities as well (www.bts.org.uk). Over the three days of the conference there were approximately 700 people in attendance and this was a great opportunity for us to show case a couple of our activities, and gain more awareness of LLTGL within the transplant community.

The Congress itself had a packed schedule of lectures and workshops with experts from every aspect of transplantation talking about the latest techniques, research and results.

We chose to highlight three aspects of our work:

- Robyn's Rainbows (don't forget that you can donate a Rainbow to someone on www.justgiving.com/robynsrainbows, or nominate someone to receive on by emailing http://www.blogger.com/rainbow@lltgl.org.uk with details of who you are, who they are (and where they are) and why you think they deserve a rainbow.

- Our Speakers Program - we piloted this in February and is our initiative, using a tried and tested method of training people with direct experience of transplant (donor/recipient or family/close friend of either) to talk about their experience of organ donation because that is the most powerful way of getting our message across. We will formally launch this shortly, but in the mean time please feel free to email http://www.blogger.com/speakers@lltgl.org.uk if you are interested in this.

- Our co-operation with the Donor Family Network, by sharing the pamphlet of quotes from donor families which we co-funded.

We found that people were very interested and many had heard of us and even Robyn's Rainbows - though Chris Rudge's (Transplant Tsar) inclusion of LLTGL in his opening presentation, certainly helped! It was also a great way of meeting some of the many people who have been great supporters of ours from the DoH and NHSBT as well as making new contacts.

I must thank Tessa Hund who ably ran the stall for the Congress and two fantastic new volunteers for us, Sarah Illic who spent two days on the stall - Sarah received a kidney from a friend late last year after some 6 years on dialysis, and Lynne Wilson who was on our first Speakers Training Course, whose mother was an Organ Donor after her sudden and untimely death some years ago.

I would also like to thank Mr Vassilios Papalois (Transplant Surgeon) and Prof Anthony Warrens both of The West London Renal & Transplant Centre /

Imperial College NHS Healthcare Trust who co-chaired the Congress and facilitated our stand.



Mandy

BUPA Manchester 10km Run - spaces available

2010-03-23T20:37:00.004Z

Who wants to join Britains "Premier 10km running event"?

Live Life Then Give Life have been lucky enough to secure some places for runners this year and well, it's now over to you to get running!!

The event takes place on Sunday the 16th of May and as usual, it's only 10km long and involves pounding the streets of Manchester! For more details about the run, have a look at the BUPA site

The fantastic "Team Ethan" are running again this year, in memory of Mr Brave, Ethan Collins. There's about 9 of them, so if you're on your own and want a running partner...why not join up with them? Have a look at their Just Giving page if you want to see what they're up to, or, if you want to make a donation through them.

We currently have about 5 places left and they're available on a first come first served basis. If you want to know more or want to register for a place, please email fundraising@lltgl.org.uk as soon as possible!

We hope to see you out there pounding the streets soon!

All the best
Matt

Update on Rachael

2010-03-21T21:14:00.003Z

Rachy is making good progress and the Doctors are pleased with her. She still has quite a way to go, but so far, so good. Her blog is being updated with the latest news and developments, so to follow her progress please visit http://lungs-for-life.blogspot.com/

x

The greatest gift of all.

2010-03-10T18:43:00.001Z

Today, desperately ill Rachael Wakefield got her call for new lungs.

We won't know anything more till tomorrow and the first few days are critical; please keep her in your thoughts.

Of course most importantly, please think about the wonderful family who said yes, and their loved one who signed the Organ Donor Register.

x

A farewell

2010-03-10T00:30:00.003Z

Jen here, writing a very emotional blog. I have, with regret, decided to step down as trustee from the board of Live Life then Give Life to focus on work and family commitments. I'm absolutely gutted to go as LLTGL has been such a hugely enjoyable, challenging and rewarding part of my life for the last 3 years.

I feel incredibly lucky to have been part of such an amazing team of people. I was invited by Emily and Emma back in 2007 to join their wonderful campaign, having admired their dedication to the cause of organ donation from afar. From our early days trying to work our way through the maze of documentation to set up LLTGL as an official charity, to the July 2007 Love Heart challenge in Birmingham and all the way through to winning Best New Charity at the Charity Times Awards last year, it has been an unforgettable experience.

Along the way, I am honoured to have made the acquaintance of so many inspiring people. The enthusiasm and dedication of all of the trustees who have made LLTGL what it is infectious. The work of all of our advocates and volunteers committed to the cause of organ donation is humbling. I have felt joy and sadness at hearing the stories and experiences of everyone who has shared their transplant stories with us.

Over the past few years since LLTGL started out, I have seen a sea-change in attitudes to organ donation in the UK and I think each and every person involved with LLTGL has played a part in that. It is for that reason that I am sorry to be leaving at what I believe that it is such an important and exciting time for the charity and for organ donation more generally.

With lots of love and hugs always,

Jen xx

Our utterly amazing Advocates: 5

2010-03-09T08:00:00.000Z

So onto Advocate number five and a quick scoot across the country to the East...to meet Audrey Eade.

Audrey has Cystic Fibrosis, but is part of the transplant community for a different reason. In 2002, Audrey was diagnosed with Liver Cancer, at the same time as she discovered she was pregnant.

Things were very uncertain for the family but thanks to pioneering surgery, a course of chemotherapy and the wonderful generosity of an organ donor, Audrey and her gorgeous little boy are both here, eight years on.

Audrey is always keen to get involved and to support other members of the transplant community. From giving talks in front of spellbound audiences at events, taking part in fundraising events, manning stalls and talking to the public, and appearing in her local newspaper raising awareness, Audrey does everything with a smile. She also works closely with the transplant team at Addenbrookes, helping them with publicity and press-related requests.

Recently Audrey braved the biting wind to take part in the Cambridge plinth project, which you can read more about here.

It's never too much trouble for Audrey to come along to a LLTGL event and sometimes she brings her gorgeous little boy, who wouldn't have a mummy if it wasn't for Organ Donation. Thank you Audrey, for your energy and your enthusiasm. You can read more about Audrey on her biography page, which can be found here.

Please....Live Life Then Give Life.

2010-03-08T22:09:00.003Z

Do you have three minutes to spare? Listen to Rachael's story to hear just why Organ Donation is so important.

Rachael Wakefield on BBC North West Tonight from Live Life Then Give Life on Vimeo.

Despite being desperately ill and struggling for each breath, Rachael managed to record this piece for her local BBC News.

Please pass this link on, and if you've been inspired by Rachael's determination to keep fighting, click here to sign the Organ Donor Register.

Thank you.

Our thanks to BBC Northwest for allowing us to use this clip.

Robyn's Rainbows

2010-03-08T09:21:00.000Z

Tor with her Robyn's Rainbow, in September 2007.

"Thank you so so much for the lovely surprise... it really did make my day and put a smile on my face and tears to my eyes."

"She was really thankful for her balloons. She said it helped lift her when she most needed it."

“You should have seen their faces when the balloons popped up. Believe it or not we still have the balloons, they are still playing with them although they are trailing the floor now!”

These are just some of the reasons the Robyn's Rainbows Initiative exists. The project aims to support members of the transplant community who are struggling more than usual, by sending a balloon in a box. The balloon is a little beacon of hope, signifying that something better may be around the corner...and hopefully, brings a smile to the recipient's face.

You can find out more about the project and how to nominate someone by clicking here. To donate towards the project, visit www.justgiving.com/robynsrainbows.

Welcome to our newest Trustee: Holly!

2010-03-07T19:54:00.002Z

We have our first new Trustee and are thrilled to welcome Holly Shaw to the board!

Holly has been an advocate for LLTGL for several years and so is well aware of the Charity's aims and work. We are delighted that she chose to apply to become a Trustee and know that her determination and hard working character will be a huge asset.

We are still looking for another new Trustee so if you are interested and have not yet done so, please email info [at] lltgl.org.uk to find out more.

Love,

Rachy's time is running out.

2010-03-03T08:00:00.005Z

One of our beautiful patient ambassadors, Rachy, attended transplant clinic yesterday. She was told words that no 22 year old should ever have to hear; that without a transplant very soon, she will die.

Please pop over here to read her account of it to leave her a message of support.

And here's our plea to all you fab supporters;

Sadly it's not just Rach who today will be sitting at home going over those words in her head. There are over 8000 people on the waiting list right now, and by speaking out, by telling a friend, by emailing round the link to Rachy's post or to the LLTGL website, we can make a difference. Organ Donation is the greatest gift of all, but it relies on us as a society to spread the word about why it's so so important.

Please take time today to think about it, talk about it, and do something about it.

Thank you x

Want to be more involved? Read on...

2010-02-26T18:21:00.003Z

LLTGL are looking for potential new Trustees to add to our energetic and hard-working board.

If this is something you might be interested in, or that you would like to find out more about, please can you email info [at] lltgl.org.uk.

Thanks!

the LLTGL Team

Our utterly amazing Advocates: 4

2010-02-26T09:03:00.002Z

Working our way up the country but now veering sideways, Advocate number 4 is our Welsh Advocate, the lovely Andrea Evans.

Andrea is a very modest and unassuming young lady who just gets on with things, but hopefully she'll forgive us for bigging her up a bit here! When Andrea was 16 years old, she contracted Meningitis, resulting in her being hospitalised for over nine months, requiring a double amputation of her lower legs and going into kidney failure.

Andrea was placed on the waiting list for a new kidney and got her life-changing call on Christmas day in 2003.

Inspired by the incredible team who cared for her at such a difficult time, Andrea now works as a nurse and somehow finds time to do lots and lots for LLTGL.

Andrea is our liaison for the Welsh campaigns we work along side, such as Donate Wales. She is a regular in the Welsh press and initiated our campaign encouraging people to contact their local cinema's and ask them to stock Organ Donation leaflets whilst the film My Sister's Keeper was showing. Andrea was also responsible for us being featured on the Vodaphone advert when she sat on top of a giant charity tin declaring that she would give donate her time to LLTGL!

Andrea is a bit of an adrenaline junkie and jumped at the chance to abseil down the lighthouse with Holly and team to raise around £3000 for us.

Andrea and Holly at the Abseil; one noticably more relaxed than the other!

You can find out more about Andrea on her biog page here. We're extremely grateful to have Andrea, her creativity and her drive on board so thank you Andrea and keep up the fab work!

Live Life Then Give Life

Tor's Plea

Guest blog by Oli Lewington

Kirstie's big day.

LAM Awareness Day.

Call to Action

Speakers project training session: 11th June

Emily

Victoria

Cystic Fibrosis - a mother's perspective.

What is cystic fibrosis?

Cystic Fibrosis Week - 8th - 14th May

Robyn's Rainbows

T-Shirts!

Fundraising and Awareness

Celebrating three years as a registered charity.

Welcoming Kirstie as our newest ambassador!

Kirsty's Hero

Clipper Round the World Race

Lorna Legs it for Live Life Then Give Life!

Daybreak spreads the word about Organ Donation.

World Kidney Day 2011

More fantastic fundraising.

The Fringe

Cake Bake!

For Jack...

Amazing Andrea

Extraordinary Emily

Fundraiser of the Month - Toughest Foot Race on Earth!

Transplant 2013

Lovely Lou

Katy urges people to Live Life Then Give Life

Christmas Media Campaign 2010

Reflecting on 2010

Our Em

Tor's Christmas Wish - campaign update

A Gift of a Lifetime

Tor's Christmas Wish

Justgiving Awards 2011

Charlene's Project

We need YOU to help us raise awareness this Christmas!

Team Glasgow's Masquerade Magic.

LLTGL Away Weekend

The British Transplant Games

Trekking for Tor

Emily speaks at the ETCO conference

The week that was...National Transplant Week

Fantastic Fundraisers: Team Jess

I Hope You Know

Marvellous Matt

Ts in the Park raises £££ for LLTGL!

George's Story

Introducing Kirsty!

Molly's Story

Monica's Story

Oliver's Story

Victoria's Story

Paul's Story

Four quick and easy steps to support National Transplant Week.

National Transplant Week starts tomorrow!

Some very positive news!

LLTGL gets Ploinked...

Amazing adventure day up for grabs!

LLTGL's stance on presumed consent.

*New T-Shirts*

"With a happy balloon bobbling up and down at the end of my bed you can't help but smile and keep fighting"

Gift of Life Memorial

Advocate Number 7

Tremendous Trustees

Independent Woman

Advocate Number 6

Update on Rachy

London Marathon & Manchester 10km Run

A Marathon Effort...

Recording of incorrect data on the NHS Organ Donor Register

BTS Congress 2010 - A lighter side

British Transplant Society Annual Congress

BUPA Manchester 10km Run - spaces available

Update on Rachael

The greatest gift of all.

New T-Shirts