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Fundraising for Lesch Nyhan Action
by Paul Hart for Association Lesch-Nyhan Action (LNA)
(To translate pages fully into English - click 'Francais' in the top righthand corner of each page and chose the 'English' option)
On April 10 2011, I will be running the Paris Marathon and I would
like to dedicate my efforts towards raising research funds for a terrible
disease; Lesch-Nyhan Syndrome (LNS).
LNS is a very rare genetic condition for which there is no cure or treatment. Boys with LNS suffer weak muscle tone, serious kidney problems, are unable to develop normally and have a compulsion to self harm. Lesch-Nyhan Syndrome is very rare: it affects approximately one in 380,000 live births. There are only 25 known childen with the disease in England. Currently the long term prognosis for boys with Lesch-Nyhan Syndrome is very poor.
I would like to raise research funds for the French association "Lesch-Nyhan Action"; a small organisation with very little overhead costs who are predominately dependant on gifts from individuals. Research is vital to help children like Nathan and recent studies are giving new insights into LNS and indicating exciting potential links to more mainstream neurological disorders such as Alzheimer's and Parkinson's
Any donation you feel you are able to make is highly appreciated and could make a difference to the life of a young child.
Thank you for your support.
Paul Hart
Colleague and friend of Nathan's family
(For information - The collection is taking place on this Aiderdonner site so the funds can most cost effectively be donated to the French Charity.
Please note you will be donating in Euros.
The exchange rate is approximately 1euro = 85p and some banks may charge a small commission for the card process. It is, however, quite straightforward, and rather fun to donate in a foreign currency!
When completing the form overleaf it might help to know United Kingdom is Royaume Uni in French
Thank you so much - Marilyn Chapman)
On April 10 2011, I will be running the Paris Marathon and I would
like to dedicate my efforts towards raising research funds for a terrible
disease; Lesch-Nyhan Syndrome (LNS).
LNS is a very rare genetic condition for which there is no cure or treatment. Boys with LNS suffer weak muscle tone, serious kidney problems, are unable to develop normally and have a compulsion to self harm. Lesch-Nyhan Syndrome is very rare: it affects approximately one in 380,000 live births. There are only 25 known childen with the disease in England. Currently the long term prognosis for boys with Lesch-Nyhan Syndrome is very poor.
I would like to raise research funds for the French association "Lesch-Nyhan Action"; a small organisation with very little overhead costs who are predominately dependant on gifts from individuals. Research is vital to help children like Nathan and recent studies are giving new insights into LNS and indicating exciting potential links to more mainstream neurological disorders such as Alzheimer's and Parkinson's
Any donation you feel you are able to make is highly appreciated and could make a difference to the life of a young child.
Thank you for your support.
Paul Hart
Colleague and friend of Nathan's family
(For information - The collection is taking place on this Aiderdonner site so the funds can most cost effectively be donated to the French Charity.
Please note you will be donating in Euros.
The exchange rate is approximately 1euro = 85p and some banks may charge a small commission for the card process. It is, however, quite straightforward, and rather fun to donate in a foreign currency!
When completing the form overleaf it might help to know United Kingdom is Royaume Uni in French
Thank you so much - Marilyn Chapman)
Target
98%
So far, I've raised
€ 9,772
With help of people.
On my target of € 10,000
On my target of € 10,000
Association Lesch-Nyhan Action (LNA)
L'Association Française Lesch-Nyhan Action Maladie Génétique (www.lesch-nyhan-action.org), créée en 1995, regroupe des familles touchées par la maladie de Lesch-Nyhan, ainsi que des sympathisants. Cette maladie métabolique d'origine génétique fait partie des nombreuses maladies orphelines méconnues et tardivement diagnostiquées. L'association est fortement impliquée dans des programmes de recherche en cours.
