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"