Tor's Plea

“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

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.

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.

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/

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Call to Action

**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

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!

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Emily

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

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.

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?

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

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

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!

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

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.

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

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Welcoming Kirstie as our newest ambassador!

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.

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Kirsty's Hero

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

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!

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.

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.

x

World Kidney Day 2011

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.

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

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!

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!