Monday, 29 December 2008

Christmas, New Year and sad news.

Firstly and most importantly, we hope that all our LLTGL supporters had a wonderful, happy and peaceful Christmas. We have been taking a small (but much needed!) break over the festive period and will be back full steam ahead come New Year.

Christmas and New Year are times of great reflection many of us, especially for Transplant recipients. Feelings of joy and gratitude of still being here thanks to the greatest Gift of all are often mixed with feelings of sadness and reflection when thinking of the donor and their family.

The New Year brings great excitement of new possibility and opportunity, but for many a fear of what may (or sadly may not) come. Let's hope that 2009 is the year when the British public really begins to sit up and take notice of Organ Donation, the huge crisis we are facing due to the escalating shortage of donors, and the incredible legacy that one can leave by joining the Organ Donor Register.

We are also very sad to say that Helen Miller, one of our courageous volunteers who contributed her moving story to our Life Stories section, passed away shortly after Christmas. Helen had been battling Emphysema for many years and was listed for a life-saving transplant in 2006. She waited and hoped, and fought hard to raise awareness, keeping a weekly diary in her local paper the Sheffield Star.

Helen’s courage and determination to speak out to highlight the plight of those in need of a transplant were a true testament to her strength of character. Our thoughts are with her family and friends at this sad time, they now face the New Year festivities without a very special lady.

If you would like to do something in Helen’s memory, simply pass on this blog to hopefully encourage others to sign the Organ Donor Register.

Thank you.


Monday, 22 December 2008

Christmas Wishes from Live Life then Give Life

Christmas is a time of mixed emotions for people affected by organ donation and transplantation. For the 8,000 people currently waiting it can be a very difficult and emotional time wondering if it will be their last. Those who have received a transplant this year will be celebrating with their families, having been given the greatest gift of all - the gift of live. And those families who took the decision to donate a loved one's organs will be grieving for their loss.

Christmas Wishes - Live Life Then Give Life from Live Life Then Give Life on Vimeo.

In the video above, Live Life Then Give Life Advocates Lisa Muscutt and Jess Wales talk about their contrasting views on Christmas and how they celebrate.

Live Life then Give Life wish everyone who has helped us over the past year a peaceful Christmas, and hope that all people waiting for transplants have their wishes come true in the coming year.

Do something amazing - register to be an organ donor.

Tuesday, 16 December 2008

We just can't say no!

We love talking about organ donation and transplantation so much that we just can't help ourselves when we get invited to speak somewhere!

Last week Emily attended a transplant and organ donation awareness day organised by medics at St. Barts and the London. They had been put onto the case by Chris Rudge, the 'Transplant Tsar' himself, who suggested that the students look us up. Emily awoke at the crack of dawn to avoid the rush-hour traffic, arriving at 7.30 to meet the team and set up the foyer full of display boards and posters (predominantly from a medical perspective) and our LLTGL table.
Chris opened the proceedings with a brief outline of the history of transplant and organ donation, including lots of complicated sciencey bits, various trends and issues arising and the current status of transplantation. Then, various transplant patients spoke - including one guy who had received two kidneys and was now waiting for a 3rd, one lady who had received a live kidney donation, and then our Emily. Em showed a video of one of the friends of Samantha Webb-Jones talking incredibly emotionally about losing her friend to the shortage of organ donors.

The day was an excellent chance for us to communicate why organ donation matters to those doctors who may eventually be on the front-line of organ donation and helping families to make the decision to donate their loved one's organs. We really want to help increase the referral rate of potential donors to donor transplant co-ordinators, so getting our message across to doctors is vital. It was also a great day as we got to speak with more people affected by transplants, more transplant and donor co-ordinators as well as the transplant man himself.
Although it was a long and tiring day, we relish any chance we get to spread the word about organ donation and transplantation and to keep people thinking and talking about it.
Much love,

Monday, 15 December 2008

Doing a good deed every day...

Last Saturday the Epsom and Ewell Division Rainbows, Brownies and Guides held a festive fundraiser in their local Shopping Centre. They sang carols, entertained the shoppers, and of course raised as much money as they could for their two chosen Charities.

One of the Charities was Emma's Bubble Trust - a charity that raises funds for specialist teenager cancer units to be installed throughout the UK. We were very proud to be chosen as the second. As well as singing their hearts out, the group had LLTGL leaflets and organ donor information, to try and raise awareness as well.

The Rainbows, Brownies and Guides raised £324.40 with their Carol singing, half of which is now winging its way to Live Life Then Give Life.

A huge thank you to everyone who took part in what looks like a hugely fun day, and well done for raising such a great amount of money!

Sunday, 14 December 2008

Festive fun!

On Sunday 7th December Live Life Then Give Life took part in their very first charity fun run event in Greenwich Park, London, where nearly 1000 people gathered and donned festive Santa suits to run, walk, stumble or dance their way around 5k of the capital’s finest park land.

Team Live Life [above] included one Trustee (our Oli), two advocates (our wonderful Audrey and Nelly), plus top supporters Helen, Sarah and Tom, not to mention the entire team of physios from the Royal Brompton Hospital lead by Lizzie Flude:
It wasn’t only the guys who were their “officially” either – we were cheered along by a large contingent of Nelly’s family and Helen’s boyfriend Brendan, all of whom ended up walking the course with us anyway.If you ask us, they were always planning to do it, but wanted to avoid looking like, as Oli so deftly put it, “a giant, red Smurf”.

The main point of the day, of course, was having fun and raising awareness of organ donation, which the physios did by attaching the name of our charity to the backs of their suits. Well, we say “backs”, what we really mean is “backsides” - at least it got people looking! As a cherry on the cake, the team have also managed to raise in excess of £1000 between them, which is fantastic.
There is still time to sponsor the LLTGL teams, so if you'd like to thank them for their heroic efforts (it was very, very, very, very cold!) and show your support for our cause you can donate either via the official Brompton Hospital physiotherapy team's page or the general LLTGL Santa Run page

Thanks for your continued support and giant big-warming hugs to all of the team and their supporters for getting out there and flying the flag.

Note to selves: must get flag for next year...

Friday, 12 December 2008

A touching memorial donation

Recently, we were touched to be chosen as a recipient charity for donations made in the memory of Anthony Paxton, a man with a passion for helping others and making an impact on the world around him. Tony was always committed to donating his organs after his death but, unfortunately, because he lived in England before 1986 and his family's move to the US he was unable to. Tony's daughter Katy suggested that the family ask for donations to be made to organ donor charities in lieu of flowers, so that he would still have been able to help.

Tony's family organised two services -one in the USA where monies went to a US organ donor organisation and one here in the UK, where LLTGL were chosen to receive memorial donations.

We are extremely honoured to be one of two chosen charities to receive these donations in memory of Tony, and will continue to try and help change people's lives for the better through organ donation.

love x

Wednesday, 10 December 2008

Our Christmas campaign kicks off!

We had a wonderful start to our Christmas campaign this year featuring one of the life-stories on our website, Carol Beckett, in one of those staple magazines of doctors surgeries everywhere: Good Housekeeping!
[click the picture to read the scanned article]
A while ago our chairman Emma had a phonecall from a journalist looking for a story to feature in a Christmas special for Good Housekeeping and she offered her Carol Beckett's story (with her permission of course!).
Carol was told she needed a liver transplant after being diagnosed with a rare liver cancer in 2007. Due to the desperate shortage of donated organs and fearing that the cancer would spread, her heroic brother offered to be her living liver donor. This relatively pioneering technique means that a relative can donate part of their liver, which would grow back to its original size within a matter of months as would the liver the recipient received. After lots of tests, Carol recieved her piece of liver in January 2008.
Although they didn't get the Organ Donor Register details in there, they did provide a link to our lovely lovely new website, where we now have a UK transplant sign-up link on every page!!

Sunday, 7 December 2008

A Christmas treat for Bethany

The adorable Bethany Salmon, who is 5 years old and waiting for a liver, had an extra special Christmas treat this week when she was asked to switch on the Christmas lights in her home town of Dewsbury, West Yorkshire.

Bethany's parents, Sam Marston and Tony Salmon, where told that Bethany suffered from a rare liver disorder PFIC2 (Progressive Familial Intrahepatic Cholestasis type II) shortly after she was born and that she would eventually need a liver transplant. After a 5-year emotional rollercoaster ride, Bethany was eventually listed for a transplant and joins the hundreds of other children and their families waiting on that special phone-call.

When Bethany was put on the transplant list, her mum Sam sent an email out to a few friends to let them know and one of them passed the message onto the Mayor of Dewsbury, who then asked the Salmon family if Bethany would like to switch the lights on. The Salmon's didn't make a big fuss at first in case Bethany's transplant call happened before the event, but as the day got closer Bethany was positively giddy by the time the day arrived! Bethany and her sister had a wonderful time switching on the lights, for they also got to meet Natalie Anderson from The Royal, the Dewsbury town crier, Santa as well as have a go on a couple of the rides.
The day was extra-special for Bethany as she was also presented with the 'Children of Courage' award before the event as testament to the amazing spirit and determination she has shown throughout the last emotional five years. Bethany's family are really proud of her too, and LLTGL are extremely grateful to the Salmon family for sharing their story with us.

Thursday, 4 December 2008

Our spangly new site!

**Stop Press!**

Get yourselves over to our fantastic new-look website right this minute!

The finishing touches are still being made, but we hope you'll agree that it looks rather awesome so far. Keep checking back in to see all the latest developments as they happen. You'll also notice that this blog is now fed direct into the latest news section, so it doesn't matter where you go, you'll be able to keep up to date with everything that's happening in the LLTGL world.

As always we love your feedback and comments as it helps us grow as a Charity so please do let us know what you think. Enjoy browsing and finding out more about us!

Wednesday, 3 December 2008

Be a Super-Hero!

UK Transplant's incredibly popular Superhero-Me!! application has gone all Christmas-y, just in time for the festive season. If you fancy transforming yourself into a SuperHero, check out this cute link:

In other news, UK Transplant (who do a sterling job promoting and arranging UK organ donation and transplantation), are conducting their first ever online survey about public attitudes to organ donation. If you wouldn't mind filling their survey in and passing it onto people you know it would help enormously in shaping the direction of future campaigns to get more people signed up to the ODR.

Take the survey!

Cheers people


Monday, 1 December 2008

Audrey tells her amazing story

Our advocate, Audrey Eade, has an amazing story to tell about the circumstances of her transplant so we were delighted that she was able to overcome her nerves to talk about it in front of doctors and nurses at the Cambridge Hepatobiliary, renal and Transplant Unit regional transplantation study day in Oxford last week.

Audrey was born with the genetic condition cystic fibrosis and although she was really well, part of her annual care at Papworth hospital was to have a variety of tests carried out. In 2002 'something' was detected on her liver ultrasound. Audrey was due to have an angiogram and beforehand was asked to confirm all the usual information like name, date of birth and whether there was any chance she could be pregnant. It can be difficult for people with cystic fibrosis to conceive, but as Audrey couldn't say for sure the tests were postponed until they had an answer. Whilst all of Audrey's thoughts were focussed on trying to establish whether she had liver cancer, it turns out that she was indeed pregnant. Audrey was three months pregnant when she was diagnosed with primary liver cancer, a disease often fatal. In what must have been a terrifying time, Audrey was referred to St Mary's in London where they were trialling a new procedure. Luckily, the new procedure shrank her tumours by 75% and the baby, who she never dared believe would make it, was born in May 2003 born fit and healthy.

When Christian was three months old Audrey had traditional chemotherapy, and although the results were fantastic unfortunately she still had cancer so transplantation was discussed. Although Audrey did not officially meet the criteria the doctors took a chance on her and she eventually was lucky enough to receive a new liver. Audrey is so grateful to her donor as four and a half years later, she is still around to read stories to her son who is also now reading them to her!

Although Audrey has told her story a hundred times before never in her life had she given a presentation in front of lots of people. She was ridiculously terrified for days before, but as she stood behind the podium she took a deep breath and with the helpful assistance of a powerpoint presentation just let her amazing story flow. We at LLTGL are so proud of Audrey, for despite her nerves, she had the courage to stand up and speak so well. She got a few laughs and a few tears but most importantly, she put across the most important thing about transplantation: It doesn't just save one life but the lives of all her friends and family. Her husband, son, father and big brother were all saved from the heartache of needlessly losing someone close.

Audrey says:
"I am eternally grateful to everyone involved in my care, and especially to the family who made such a selfless decision at such a difficult time. Although the future remains uncertain, we are all extremely happy that we got these extra years. It means the world to us all"

Wednesday, 26 November 2008

It's not just about saving lives...

Meet Sophie. Isn't she beautiful? She is (indirectly) only here thanks to the Gift of Life.

Peter Williams was a young healthy dad when he was struck down by a sudden virus which attacked his heart. Suddenly he went from being an active father and husband, to a dependant housebound and very sick man, who was in urgent need of a Transplant. Peter had a machine called an LVAD implanted, which essentially took over the work of his damaged heart and kept him alive whilst the family waited and hoped.

Two and a half years later, with Peter severely weak and now starting to suffer strokes, that call finally came. You can read more about the family's journey on his wife Sarah's blog.

Thanks to a complete stranger Peter is an active daddy once more. His children will grow up knowing their dad as a lively part of their family, not as a distant memory of an ill man that waited for a transplant that never came.

We always think about the patient - the person who is saved directly by the transplant - but it isn't just them it affects. Peter's whole family has been tranformed by this kind act. And a few weeks ago, the newest addition to this happy family, gorgeous little Sophie, was welcomed into the world.

Who knows how many lives you will transform by signing the Organ Donor Register; it's not a one off life-saver, the ripple effects are unlimited.

Find this entry motivational? Here's how you can help. Email the link to as many friends and colleagues as you can and ask them to consider taking 2 minutes to read it and then maybe to click here to sign the organ donor register.

Think about it. Talk about it. Do something about it.

Thank you x

Tuesday, 25 November 2008

A dance extravaganza!

A few weeks ago LLTGL were privileged to be invited to speak at the Kalaalayyam festival of dance held at Watford colosseum on November 1st. Kalaalayyam is a dance school that promotes Bharatanatyam, a classic dance form from the Indian state of Tamil Nadu. Raising awareness of the need for more organ donors from the South Asian communities in the UK is really important, so it was a perfect chance for Emily to use her magical powers to speak of the desperate need for more transplants to the 1700-strong audience drawn from Brent, Harrow, Watford, Lewisham and Coventry boroughs.
Em spoke for about 15 minutes and showed a video featuring Nehal Shah (one of our lovely advocates who is currently waiting for a kidney) and Nyila and Zulf Parveen who sadly lost their young son in the face of the severe shortage of organs. The video had an intense affect on the audience and you could hear the sadness of the viewers as Zulf broke down in tears on camera, talking about the son he'll never see again. We'd really like to thank Nyila and Zulf for sharing their story and allowing us to tell it, for we watched hundreds of audience members leave clutching organ donor register leaflets and cards.

Monday, 24 November 2008


Our lovely friend Jacqueline Didsbury emailed us yesterday with some totally amazing news!

She has been busy amassing a small army of supporters to walk along the Fife coast from Elie to Leven and raise us some lovely money to help keep promoting transplants! Having lived in Fife for a year, I am totally jealous as the coastline there is stunningly beautiful and one of my favourite parts of the whole of this lovely country-- I'm sure it'll be a great day for all!

Even better still, Jac has roped Sarah and Gordon Brown in-- and they sponsored her £100! Check out her Justgiving page for the proof!

Friday, 21 November 2008

Opt out, working hard, and great news.

Apologies for the delay in updating - this week has been frantic for all team members but we are working very hard honest!

Firstly backtracking to Monday's news. Our official reaction to the ODTF's conclusion on an Opt-Out System can be read here on our website. There was some fantastic Media coverage throughout the day including Emily and Nyila on This Morning, Sarah Milne on ITV and Channel 4, and various others on their local news. Thank you to everyone who gave an opinion and helped keep the focus on Organ Donation and what a fantastic gift it is.

Very exciting news yesterday when Sarah texted to say William had just gone into Theatre for his small bowel transplant! It's very early days yet but so far he is in ICU and doing well. Please keep him and the family in your thoughts. Perhaps if you want to do something, you could talk to someone about his story and remind them that small bowel is not listed as an organ on the organ donor register, so in order to help someone like William you would have to tick "any tissues and organs".

The LLTGL Team had a very lengthy meeting on Saturday to touch base and ensure that all aspects of the Charity are being covered to move us forwards. These are very exciting times for us at LLTGL and we cannot thank everyone enough for their ongoing support as we grow as an Independent Charity.
Holly's Battlefront campaign continues to do really well; Emily is still helping her out and a further two people are coming on board as Holly's keep checking back on her campaign page to see how she's doing and what she's up to and don't forget to leave her a message to spur her on!

Sunday, 16 November 2008

ODTF comes to a decision.

The Organ Donor Task Force (ODTF) will announce its official decision on the suggestion of implicating an opt-out system tomorrow morning.

The result has actually already been leaked to the press but we will write a proper entry tomorrow after the official announcement.

As always, the opinion of our fab Trustees is being highly sought after by various journalists, with potential appearances on ITVs This Morning, ITV News, and perhaps more...

keep your eyes peeled for us!

Monday, 10 November 2008

The word continues to spread!!

Last week, our very fabulous advocate Lisa Muscutt continued to spread the word through our series of talks to various interested parties with a presentation at Hammonds, a leading commercial law firm based in London. This was a really exciting opportunity for us to diversify our talks even further, and Lisa did a sterling job by handing out various leaflets about donor awareness and showing a DVD of herself in the Brompton hospital before her transplant, talking about her struggle with six false alarms and the transformative affect the transplant had had.

Many of the 40 people that attended had tears in their eyes as Lisa talked so movingly about her CF treatments and how without the generosity of a complete stranger she would not be here today.
Our main aim here at LLTGL is to get people to think and talk about organ donation, and although Lisa says that she found the experience a little nerve wracking, we at LLTGL are so proud of her for her courage to talk about her transplant experiences and make people think hard about signing up to the organ donor register.

Sunday, 9 November 2008

Big thanks to the lovely Pauline from Donor Family Network

Our chairman, Emma, has been a bit poorly recently, so we were really chuffed that Pauline from the Donor Family Network was able to step in at the minute to give a presentation to paediatric nurses at St. James hospital in Leeds.

Giving talks is one of the ways in which we feel we can make the biggest difference, and such 'study days' is an increasingly important route through which we are getting the message about transplantation out there to people on the front-line of medicine. Pauline did a fantastic job of integrating both her experiences from a donor family point of view, and the experiences we at LLTGL have had in waiting for a transplant.

This unique approach to talking about the importance of transplants was very well recieved, so much so that Pauline was invited back to give a talk at a similar study day in Blackburn at the end of November. We can't thank her enough for integrating both sides of the transplant story, and it is fabulous to have another charity working so well with us.

Friday, 7 November 2008

For the first time since our inception in March this year, Live Life Then Give Life is taking part in a mass-sponsorship charity event. Over a dozen runners from across the country will be dressing up as miniature, slimmer versions of Santa Claus to run the annual 5km run around Greenwich Park on Sunday 7th December 2008. The team will include LLTGL Trustee and two of our advocates (Nelly and Audrey) as well as others touched in some way by transplant.

The sponsorship page for the run has just gone live courtesy of our friends at Justgiving. You can sponsor the team or any individual at Be sure to make a note of who you're sponsoring in the comment section, be it an individual, a group of individuals or the team as a whole so that we can all keep track of who has supported us and we'll know who to thank! And anyone living in or around London, you must come on down to Greenwich park and give us a shout as we all try our best to get round without going the colourof our suits...;)

Thursday, 6 November 2008


Fantastic news to greet you with this morning LLTGLers!

Holly Shaw, one of our Fabvocates and hardcore campaigner has won Channel 4's recent competition to earn a place as the 20th Battlefront campaigner!

Now the campaigning really begins, but as Holly is still in hospital waiting for her brand new kidney to wake up and start behaving, our very own Emily is going to step in and help get it all started.

Please do help support Holly in this and spread the word about her fantastic work; we're all really proud of her here and wishing her lots of success with her Battlefront campaign. Don't forget, your support will help! To join in and to find out more about how to help promote Holly's campaign on blogger, bebo, facebook, myspace etc... just go to Holly's battlefront page


Monday, 3 November 2008

An emotional but inspiring day.

On Tuesday, Emily and Oli drove up to Coventry to visit Nyila and Zulf - a very brave couple who had agreed to speak to us on camera so we can use their story for raising awareness. Fantastic stuff.

At LLTGL, we come into contact with all sorts of incredible stories, many of them joyous as we get to witness people starting an incredible new life thanks to the gift of organ donation. However sometimes sadly the endings are not as we would like. Nyila and Zulf's son, Ubaid, developed complications with the digestive system and liver when he was born. He lived in hospital for most of his life, on many treatments including TPN to keep him alive. Nyila and Zulf were told that Ubaid's liver was failing and he was put on the transplant list.

They waited and hoped, week after week, staying positive that the call would come. But 8 months later, Ubaid ran out of time. They spoke clearly and passionately about their son, and Emily talks on her blog about how emotional it was to interview a couple for whom the grief is still so raw and so new. How the couple found the strength to do that interview is beyond us, but we are so very grateful that they did. We will hopefully get the video up here soon for you to see how powerful their story is.

It is, of course, a reminder that sadly children need transplants too. Children like William, like Bethany. The concept of organ donation here becomes even more emotionally fraught; could you donate your child's organs if the time ever came? It's a consideration I am sure none of us would even like to contemplate, but there are parents all over the UK with very sick children in desperate need of a transplant who need you to take a moment to think about that question.

Thanks to Niyla and Zulf speaking out about their story, lives will be saved. It is too late for Ubaid, but his story will motivate and inspire people to sign the organ donor register to try and prevent this happening to other families. And that is a truly special legacy indeed.

Wednesday, 29 October 2008

Talking, talking and more talking.

At LLTGL, we talk a lot. In fact we're pretty good at talking. And we really do believe that talking is key in getting people to understand more about organ donation and transplantation. Recently we have been utilising this skill (yes talking is a skill honest) to spread the word, and some of you have been helping us do so.

As Jen detailed here, Emily went to Justgiving to give them an idea of what LLTGL do and about her story, then Emma went up to Liverpool and attended a study day for Medical professionals about organ donation, the logistics, and the importance of it, giving a fantastic presentation about LLTGL - who we are, what we do, and how we can help.

A week or two later, Emily disappeared off to Manchester to give a talk at a similar study day which was equally well received. Some feedback from these talks included:
  • "Emotive. Will stick in my mind. Very motivational for me to take action."
  • "Excellent presentations, very thought provoking, we must do more. Thank you."
  • "Organ recipients were extremely inspiring. As an ICU nurse I only see one side of organ donation which can be quite depressing and emotionally exhausting. To hear and see the other side of it makes such a difference and sheds a positive light on this topic and my experiences"
  • "Excellent seminar. We hear so much about the demand for donors and their organs. To physically see and share in these stories put this debate into context"

We give talks to anyone and everyone, and can tailor them appropriately. Do you have a workplace or group we could speak to? If so, just drop us a line and someone will get back to you asap to discuss things further.

On Saturday, Emily is heading to the Watford Colosseum to speak at a rather large gathering about the lack of people from an Ethnic Minority background on the organ donor register. Nehal spoke beautifully about her situation waiting and yesterday Oli and Emily went to Coventry (literally, not metaphorically) and had the most emotional but inspiring day...

More on that when the pictures are in. But for now - keep talking! Remember...

Think About it. Talk about it. Do Something About it.


Monday, 27 October 2008

Great News!

A few days ago we got some fantastic news we'd been waiting and hoping for; one of our Fabvocates, Holly Shaw had been called for transplant! The operation took place overnight and all went well. YAY!

It's very early days, but so far so good. The kidney is not yet working but apparently that is not unusual, so now it's a question of "wait and see" and hope that little kidney wakes up and starts working.

Holly is already sounding like her usual positive self but is feeling pretty sore and could do with some lovely wishes from our supporters. You can keep up to date with Holly and how she is doing on her blog.

Come on Holly - we can't wait to have you back and are thrilled for you!

Christmas Cards

This year, LLTGL are once again promoting the fantastic range of charity cards from the Daniel Courtney Trust, available here:

The charity supports awareness of organ donation and all Xmas cards promote the NHS Organ Donor Regsiter on the back (along with the contact details to sign up). The Daniel Courtney Trust is a fantastic charity who we are proud to be associated with. It was set up in memory of a gorgeous little boy called Daniel who was born with a condition called MVA and sadly passed away in 2005 after undergoing two liver transplants. Many of the DCT Xmas cards are designed by children and are great quality -- plus, every pack you buy really will make a difference -- what more could you want from a Chrsitmas card?!?

Sunday, 26 October 2008

The Worlds Biggest Walk comes to Middlesex

October 25 2008 saw the inaugural World’s Biggest Walk ( with people organising 5km walks starting at 12noon GMT all over the world. In the end, there were 109 walks in 18 countries across all 5 continents, including South Africa, Canada, Australia, China, Bulgaria and Nepal.

Live Life Then Give Life Advocate Nehal Shah organised her own Walk around her local area, so yesterday at 12noon a party of some 15 people set off from Stanmore Underground station and walked the full 5km around Stanmore and Edgeware, trailing big blue Organ Donation balloons and handing out leaflets.

Originally from Kenya, the Shah family are working incredibly hard to try to redress the balance in organ availability for people from black and Asian backgrounds. Although more likely to need organ transplants than the white population, only a tiny percentage of the black and Asian populations of the UK have signed the Organ Donor Register, leaving many people like Nelly, waiting for over 5 years for a kidney, in a very real purgatory with no knowledge of whether or not their gift will come.

Nelly has worked tirelessly for Live Life Then Give Life since becoming an advocate and we were delighted that Emily and Oli could be there with her to help her raise awareness and compete a truly ground-breaking global event. Both of the trustees, however, wish to point out that the work was done 100% by Nelly and her family and they just tagged along for the (rather energetic) ride!

Yesterday also saw the first outing for Live Life Then Give Life’s all-new media production unit. Consisting of Oli with the camera and Emily wandering around holding what looked like a dead cat on a stick, the video from the event will be up here shortly as the Charity secures its commitment to help raise even more awareness through documenting the events we take part in and are invited to.

Thursday, 23 October 2008

One happy Robyn's Rainbows recipient

It always puts a huge smile on our faces to hear from those who have received one of Robyn's Rainbows, especially when they are as smiley and happy as this handsome fellow below:

William, who is waiting for a small bowel transplant, has been having a tough and painful time recently with frequent and life threatening infections. It was awesome to read on his mum's blog that the surprise balloon we sent courtesy of our Robyn's Rainbows initiative put a huge grin on his face. To see more pictures and to read more about why we keep on campaigning for more transplants, head on over to

If you want to nominate anyone to receive this special surprise, insipired by our dear friend Robyn's unsuccessful wait for a transplant, please email emily at livelifethengivelife dot co dot uk.

You can also donate directly to our RR fund at our justgiving page here.

cheers loves

Wednesday, 22 October 2008

Cosmo Awards 2008

We at LLTGL were so proud to hear that our gorgeous founders, Emily and Emma, recently reached the shortlist of the Cosmopolitan "Women of the Year" Awards for their firm friendship that kicked off our amazing journey as a charity.

Two years on from Emma and Emily's decision to campaign for more organ donors, it is hard to believe just how important their friendship is to the direction we've gone. After losing many friends due to the devastating shortage of organ donors and Emily's subsequent listing for a double-lung transplant, they teamed up to try and change the desperate sitution. Their determination to stay focussed on working together towards their shared goal, despite Emily's transplant and complex recovery, continues to be an inspiration for the three of us that joined LLTGL last year.

Despite not winning the award in the end, we were so happy that they reached the final stages of judging as Emily and Emma managed to get the attention of Jamelia, Fearne Britton and Sarah Brown (Gordon Brown's wife)! We'll be sending them some T-shirts and trying to recruit them for our future events ;)

Sunday, 19 October 2008

Raising awareness for transplants around the world

This is just a quick reminder that the "World's Biggest Walk" kicks off this Saturday 25th October at 12 noon GMT. The event aims to raise awareness of organ donation and transplantation by encouraging the world to walk 5km across 5 continents.

The walk is totally free, and anyone can participate by walking around their local hill, forest, park, village, town or anywhere you can think of! You can organize your own walk, or join any of the ones listed here. You can raise even more awareness by easily writing to your local paper and asking them to feature it.

If you do take part, don't forget to send us some pictures of the fun!

Thursday, 16 October 2008

Update on Hol's campaign


Holly's campaign received 1697 votes and an astounding 183 comments on her Battlefront webpage, eventually finishing in second place!!!!! A hugest thanks to everyone who voted and left lovely messages about how organ donation has touched their lives.

The judges met earlier this week to decide who out of the 10 made the top 3, and we are pleased to report that Holly is one of them!

All we need to do now is hold on tight to see if Holly has made it to that coveted 20th spot, to be announced on November the 3rd

We can't wait that long!!!!!

Wednesday, 15 October 2008

The lovely Justgiving

Speaking about transplants is a key concern of ours as we think it is the personal stories from the heart that really motivates people to think about signing the organ donation regsiter and tell their family and friends about it. Whilst in theory most people see organ donation as almost a moral duty to society, it remains quite an abstract concept until you read or hear about a real life person and how the gift of organ donation can really change a person and their family and friend's lives forever.

It was a real treat this week therefore, when we got to talk to JustGiving about who we are and why we fundraise. Emily, true to form, was on hand to mobilize her amazing superpowers of non-stop-talking and came up trumps with an inspirational speech (which you can read about here on their blog)

We currently have two ways of raising funds for LLTGL via Justgiving. The first is our general page from which you can either donate money straight to us or you can set up an online fundraising page, email all your mates and raise money for us by doing something mad and crazy like running.

We also have a fundraising 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, who lost her battle for life whilst waiting for a double lung transplant in September 2007, aged just 24. The Robyn's Rainbows fund is to give support and hope to people who are very sick or struggling in the form of a balloon to remind them that they are not alone and that sunshine might be just about to break through.
We are currently redesigning our website so that there'll eventually be a form so you nominate someone you know to receive a Robyn's Rainbow from us. In the meantime, if you know anyone who is struggling with any aspect of organ donation or transplantation and could do with a beacon of hope, please email Emily (via her blog).
lots of love,

Friday, 10 October 2008

A very important meeting

The weekend just gone was a really important one for LLTGL as we finally got to meet some of our very fabulous Regional Advocates!

For those of you that don't know, we at LLTGL have a network of voluntary "ambassadors". These are ordinary people who have a personal link to our main cause of promoting organ donation and transplantation that we at LLTGL constantly campaign for, and who are happy to speak to the media, appear at talks/events and generally raise awareness about transplants. Our advocates are all affected by transplants in different ways, but what they all have in common is their boundless enthusiasm for organ donation and unwavering support of our charity.

We were therefore pleased as punch this weekend when we got to meet four of these amazing people at a photoshoot held in Oxford, kindly organized for us for free by the very talented and super-awesome photographer Megan Laurie from ML Photography. Megan immediately made all of the advocates feel at ease and managed to get some really great shots of everyone larking about having fun and modelling our LLTGL T-shirts.

The shots will be featuring on the main site at some point soon, but to satisfy your curiosity in the meantime, check out the video of the shoot put together by Oli, featuring advocates Lisa Muscutt, Nelly Shah, Olwen Sawney and Audrey Eade.:

We were really sad that all of our regional advocates couldn't be there on the day, but hopefully we can grab them all for a piccie at some point -- we will be profiling each and every one, along with what they've been up to, so watch this space for the gossip!

Tuesday, 7 October 2008


One of our fabulous advocates Olwen Sawney (whose husband is waiting for a heart transplant) has sent us a great picture of people signing up to the organ donor register at Essex university Freshers Fair.
UK Transplant are currently taking their 'Superheroes' campaign around the country in a bid to get students signing up, and as you can see from this picture it looks pretty successful! Their Superhero-me invites people to create their own superhero character, showing that everyone can be a superhero and save a life by joining the NHS Organ Donor Regsiter. To take part, visit !!

Every year UKT take their roadshow around the universities but at the moment this is only limited to around 15. If you're interested in helping us get a group of volunteers together to man stalls (and especially if you've been affected by transplants and have a story to share) - give us a buzz!

Thursday, 2 October 2008

On the road

One of our key activities in helping to increase the number of organ donors is giving talks to various interested parties about the difference transplants can make, whether that is to local community groups, schools, medical conferences, hospitals and government departments. We at Live Life then Give Life are intimately connected to all kinds of people affected by transplantation and all of our trustees have had or will need transplants, and therefore we can speak passionately and knowledgeably about why transplants are so important.

This week therefore we were excited that Emma, along with Colin Prior from the Lewis Prior Foundation and Pauline Weaver from the Donor Family Network, were able to give a presentation at the Paediatric Symposium held at Alder Hey in Liverpool. This event was a really great opportunity for them to speak about transplants to a wide audience and was particularly important as a lot of people in attendance were those on the "front-line" of organ donation: Intensive Care and Accident and Emergency nurses who support the families of loved ones that have died or are on life-support.

Emma's 20 minute talk and PowerPoint presentation began with a little bit about our mission and history before outlining the huge problems with organ donation and transplantation that we at LLTGL are trying to tackle. We included a slide of 8 of our young friends we have lost due to the shortage of organ donors and to demonstrate just what spurs us on to keep going.

Emma and Colin Prior

Emma then passed over to Colin to tell his family's experience of his son Lewis Prior's wait in vain for a heart transplant. Colin's emotive speech so articulately demonstrated the need for more organ donors that a lot of the audience were in tears as they listened to his painful and emotional story. We are so grateful to Colin for having the courage to speak to such a large audience about the loss of his son Lewis. His talk had such a major impact on all who hear it and showed the stark and painful reality of the donor shortage in a way that we could have never done alone. If you get a chance, we'd be happy if you could visit the Prior Family's charity website set up in memory of Lewis at

Emma then concluded before passing on to Pauline to answer questions and talk about her experience as a donor family. The questions from the floor were enlightening as it seemed many struggled with approaching potential donor families at a time of such grief for fear of making the situation worse. Pauline's incredibly powerful reply was " How could it possibly make it worse? Nothing can get any worse at that point, you've just lost the most important person in your world, how will that upset you further? Its actually offering a glimmer of hope. Every family should have the right to be asked. All I knew was that I had the chance to give another family what I wanted so much but couldn't have."

The feedback from our section of the talk was incredibly positive. Our stall at the conference, set up with our leaflets, trolley coins, material from UK Transplant and Sue and Richard Cansdale's Transforming Lives book proved extremely popular and Emma got some good chances to speak and make contact with many of the conference attendees.

Finally, we were happy that Emma was able to meet up with Holly Shaw, one of our advocates, and her parents for a meal in Liverpool and to catch up on her Battlefront campaign, which is currently getting support in mind-boggling proportions! The USA transplant community is now aware of her need for votes and is piling them in, along with lovely comments too. If you haven't yet voted for her campaign, please pop on over and show your support with a vote and message about what organ donation means to you.

Emma and Holly

Monday, 29 September 2008

More TV-related happenings

We at LLTGL are amazingly lucky to have so many supporters tirelessly getting organ donation out there through various media. Our utterly fab advocate Jessica Wales (19), who is waiting for a double-lung transplant, is currently a Sky1 celebrity after being featured on Noel's HQ in a bid to raise awareness of the need for more people to register as organ donors.

The show provided moving viewing, as Jess and her Dad demonstrated the impact on people and their families waiting for that all-important transplant. Andi Peters also highlighted the impact of the shortage of donors from black and minority ethnic communities, something we believe needs serious attention.

Thanks to Jess, Andi Peters and all the other people involved in the day (including Liz McLarnon from Atomic Kitten!)
within 90 minutes 2000 people had clicked through to the NHS Organ Donor website. The show was so sucessful that the number of viewers ended up crashing the site and, sadly for us, the link to UK Transplant. Whilst we at LLTGL always prefer that TV shows, news broadcasts and articles give the direct website link to UK Transplant, we were pleased that the show got viewers thinking, talking and interested in organ donation -- something that we firmly believe needs to be done a lot more often.

Wednesday, 24 September 2008

Holly needs your vote to get organ donation on the telly!

One of our superstar supporters, Holly Shaw, is currently a contender for C4's Battlefront - a campaign with a difference.

The Battlefront site has pages for their favorite 19 campaigners and we want our Holz to be the 20th one picked for a star appearance on their TV series later in the year. Only the campaign with the largest number of votes will get through, so please get busy clicking!

Holly says:
"Did you know that 1000 people die every year because of the shortage of organ donors in the UK? In 2005 I went on the kidney transplant waiting list after a sudden illness caused kidney failure. I'm now kept alive by a dialysis machine which I’m attached to 3 times each week. For many others on the waiting list this isn't an option - for them an organ transplant is a matter of life and death. My campaign will raise awareness of organ donation and encourage more people to think, talk and do something about it. As a result, this campaign will save and transform lives, perhaps even my own. Waiting is tough! However I have seen the difference a transplant can make and this gives me hope for the future that I will be able to do the things I have dreamt of."
To keep up with Holly and her life on dialysis as she waits for her transplant, check out her excellent blog

If you could kindly pop on over to her campaign page and show your support with a vote and a little message about what organ donation means to you, that'd be awesome.

You have until 8th October to help get Holly and her campaign for organ donation on the telly!

love to all

*update- Holly's campaign is the most popular- let's keep it that way!

Monday, 22 September 2008

Back to business

We're all still buzzing here at LLTGL after our win on Thursday, but be assured that we're not immediately about to sit back feeling chuffed with ourselves ... Rather, the award has motivated us to keep on keeping on, and make further inroads into that shortage of donors we keep banging on about.

The beautiful Lisa Muscutt, who finally received a double-lung transplant after an incredible 6 false alarms, has been out and about recently helping us spread the word some more. She represented us at the Harefield Fun day, using her incredible story to promote the organ donor register via a LLTGL stand. She managed to galvanize a couple of friends, dressed in the obligatory fancy dress, to hand out as many leaflets as humanly possible and sell some of our trolley-coins. She was also lucky to meet the great Magdi Yacoub, the surgeon responsible for saving thousands of lives through the Harefield transplant programme.

People are always really interested in the organ donor register as it touches so many lives, from the tragic stories of people waiting for their transplant, to those lives that donation has transformed, and to the very special donors and their families. Having someone like Lisa tell their story helps remind people of the very human and personal side of organ donation, and it's amazing power.

Come and get involved

Friday, 19 September 2008



Well, what can we say, other than: WAHOOOOO!!!!!!!

It was a complete shock (as can be seen from the video below!) as we were up against some charities that do incredible work such as Help the Aged, BLISS, and the Scouts. We thought we might be in with a chance for a"Highly Commended" mention, and as soon as that went to The Fatherhood Institute we were convinced that was the end of it for us.

To our delight and absolute surprise, the judges declared us the winner of the award, citing our work as "an outstanding campaign made up of many effective and innovative strands and approaches, achieving great success”!

Receiving this prestigious award makes us so proud and thankful for all of our supporters and volunteers, without whom we would not have acheived this great success. So, a mega-big-massive-huge thank you to everyone's efforts to raise the profile of organ donation

A full write-up and gossip can be found on Emily's and Oli's blog

In the meantime check the moment we won here:

Live Life Then Give Life - Charity Times Award Winners from Oli Lewington on Vimeo.

Note the cheesy grins!

Thanks to the rather lovely Duncan from The Football Foundation, we finally have some pictures we can show you!

The Live Life then Give Life Team!
(l-r: Jen, Emily, Emma, Oli, Hal)

Emma and Emily, founder members of the campaign and charity, wearing their proudest-ever faces holding our beautiful, shiny (and dangerous!) award!

ps. we're now on the community newswire, so fingers crossed that we can get us some more coverage of the organ donor register

pps. Emma has provided some photos from the night here on Facebook, which you can view even if you're not registered

Wednesday, 17 September 2008

Charity Times Awards 2008- Wish us luck!

LLTGL are extremely excited and proud to have been shortlisted for a Charity Times Award 2008 in the category "Campaign Team of the Year". This is awarded to a campaigning team on the basis of innovation and results that achieve, or exceed, the aims of a campaign or campaigns during 2006/7.

The awards ceremony is held tomorrow at the Royal Lancaster Hotel in London, and will be a really great opportunity for us to learn about other small charities and the ideas they have for taking their messages forward. It is also going to be great for all of the Trustees to meet in the same room, something we haven't ever done!