Wednesday, 26 January 2011
Motivated by the needless death of a close friend and colleague, who could have been saved by the availability of a heart, Alexa is determined to raise awareness and funds for us here at Live Life Then Give Life and our good friends at the Donor Family Network.
When asked why she wants to undertake such a momentous physical challenge, Alexa, says “I’m running this extreme race to raise a considerable amount of money for a charity that sits close to my heart. I feel so fortunate to be healthy and able bodied and the suffering I’ll endure is incomparable to the real pain and uncertainty that people who are in need of new organs have to experience.“
Alexa was inspired to raise awareness following the death of her friend Dan, who was in desperate need of a transplant due to heart failure. She says “At the tender age of 25, Dan lost his life. If a heart could’ve been found for him he may well still be alive today.”
“All other problems fade into insignificance when your life is at risk. For these reasons I must do this marathon. Not only in memory of my dear friend and colleague Dan, but for all those who are hoping to live a full and healthy life right now, but who are waiting for new organs to make that a possibility.”
Alexa feels strongly that she is lucky to be a fit and healthy young woman, and wants to use this to help others less fortunate. She is determined to make a difference but needs your help and is urging people to donate to her cause, please visit www.justgiving.com/Alexa-Torlo
Monday, 24 January 2011
In 2010, we were asked to participate in the formation of Transplant 2013, a group of patients (and patient organisations), Clinicians and Industry representatives with the following mission statement:
"To promote leadership of organ donation and transplantation in Parliament and other relevant institutions and facilitate communication and consensus within the transplant community in order to support the implementation of the Organ Donation Taskforce’s recommendations, ensure that the target to increase organ donation after death by 50% in 2013 is met, and significantly increase the number of organ transplants."
The inaugural AGM was held in May but the formal launch was on 23rd November in Portculis House, Westminster and trustees Mandy (our representative on this project), vice-chair Matt and Holly all attended.
Transplant 2013 has a wonderful champion in Chris Williamson MP (Shadow Minister for Communities and Local Government) who has been personally affected by organ donation as his wife Lolly sadly died waiting for a single lung transplant 7 years ago. He spoke candidly about his wife, and their struggles as she waited on the transplant waiting list. There were speeches from the President of the British Transplant Society (BTS) Keith Rigg (who is also Chair of Transplant 2013) and the National Clinical Director for Transplantation, the wonderful Chris Rudge.
Excitingly Chris Williamson launched the APPG (All Party Parliamentary Group) on Transplantation on December 15th, and so far has good interest from his fellow MP’s!
As well as LLTGL and a number of MP’s, other groups represented included the various groups participating in Transplant 2013, such as:
- Charities and Clinician Groups included: British Transplant Society; National Kidney Federation; British Liver Trust, Cystic Fibrosis Trust and the British Society for Immunology
- From Industry – Novatis; Astellas, Genzyme and Alexion
As well as others we may not have mentioned!
It was a great opportunity for us to talk with people who share our goals and want to see the numbers of transplants being undertaken increased and more people signing the Organ Donor Register. We met up with some old friends too including Lucy Pearson and her Mum.
So watch this space, we will keep you updated on our continuing work with Transplant 2013 and its progress.
Friday, 21 January 2011
Do you want the good news first or the bad news?
Well we'll start with the bad, our lovely Louise Lawrence is stepping down as an advocate for us, however the good news is she is taking a sabatical and will be returning in a years time!
The story behind her leaving is an amazing one. Lou works for Thomas Cook and she was flown out to their managers conference in Turkey as a last minute arrangement in December 2010. Unbeknown to her, her Mum and two very close friends and colleagues were flown out the next day in secret…her friend had been planning this for four years and had been waiting until Lou got better!
As Lou was sat enjoying the Gala Night on the final eve her very close friends went on stage and started talking about someone who was about to receive the Roger Flowers CEO Employee of the Year Award. It took her a long time to realize it was her!
Louise went on stage and there were several surprises for her: a VT from her friends, her Mum appearing on stage and she was then told she could have an all expenses paid holiday to anywhere she wants in the world! Amazing!
So Louise is starting a new adventure, we are all so pleased for her and her new role being the Thomas Cook Ambassador for the UK and Ireland
She will be attending many events as a guest of the CEO of Thomas Cook.
Louise says "I hope to achieve many things with my role including involvement with the Thomas Cook Childrens Charity and the Olympics 2012. Being an advocate was such a special role. Having a platform to directly address an issue so close to me and my family was a true honour. Working with a great team who share an ethos was incredible and I've learned so much along the way. I feel like a truly valued member of the LLTGL team and hope to return as an advocate in the future."
We at Live Life Then Give Life wish you lots of love and luck on your new venture and we can't wait to have you back in a years time!
Friday, 14 January 2011
21-year-old Katy Savage from Biddulph in Staffordshire fights for every breath. Katie has a lung disease which has left her lungs functioning at just 23% and she is now in desperate need of a double lung transplant. In spite of her plight, this brave and inspirational young woman is determined to raise awareness about the need for organ donors, and funds for us here at Live Life Then Give Life.
Katy with her beloved dog Poppy
Katy has a rare lung disease called Obliterative Bronchiolitis and endures a daily routine filled with medication, treatment and frequent hospitalisations.
Katy was just 17 when she was told that a double lung transplant would be her only hope of survival. Katy says “This came as a terrible shock to me, my mum, dad and little sister because transplant had never been mentioned before. I was told only small pockets of my lungs still worked. My condition is so rare that they were unable to tell me what my prognosis was.”
In April 2007 Katie went active on the waiting list and Life for the family went on hold as she waited, but months turned into years and the call still didn’t come. Then in November 2009, Katy caught swine flu and became critically ill. She was rushed to intensive care where doctors battled for 2 weeks to keep her alive.
Thankfully Katy survived, however she is now in a severely weakened state and relies on a ventilator 24 hours a day to keep her lungs working. Katy is only too aware that her call may not come in time. Despite being so very ill, Katy is determined to raise as much awareness as possible, and is even trying to raise money by not eating chocolate or crisps for a month and asking for people to sponsor her.
Katy says “A transplant would allow me to do everything; I could have a life and I would be able to do things I would never have been able to do.”
There are more than 10,000 people like Katy in need of an organ transplant right now. 1,000 of those will die this year. You can sign the organ donor register online at www.lltgl.org.uk or by
Please consider sponsoring Katy’s fundraising challenge at http://www.justgiving.com/katysavage
Katy you are an inspiration to us all here at LLTGL and we thank you for all your courage and hard work.
Monday, 10 January 2011
We finished off the year with our Christmas Media campaign which was, as usual, a huge success. Thanks to dozens of people touched by organ donation sharing their stories with us, we were able to get the message out to millions of people across the UK about how organ donation transforms lives.
Double lung recipient Clair Hemmington was featured in her local paper along with her beautiful 7-year-old daughter Lucy.
Rich Burbedge spent last Christmas in hospital, fighting for every breath, but this year was able to spread the word about his new lease of life, thanks to his double lung transplant. Siobhan Morris from London also celebrated a Christmas she never thought she'd see, and made the front page of her local paper.
The Romford Recorder featured LLTGL Ambassador Victoria Tremlett and her campaign Tor's Christmas Wish. Fellow Ambassador Rachy was featured on BBC Manchester radio and BBC Northwest, as well as in the Manchester Evening News - hugely inspirational as Rachy has suffered many complications since her transplant and yet remains so grateful, reminding people that without the transplant, she would not even be here.
Angharad Van Der Walt from Pontypridd in Wales was featured in her local paper talking about her wait for new lungs. We were delighted to hear that Angharad was called for transplant in the New Year and is currently recovering in Harefield hospital. It's early days but so far she is doing well. We're all thinking of you Angharad, and of course of the family who said yes and who have given you the gift of life.
According to calculations so far, our Christmas media campaign reached over 2.9 million people this year. Huge thanks to all the fantastic volunteers, just some of whom are detailed above, who shared their stories with us, and with the general public. Raising awareness really does save lives.