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Campaigner
Duncan J Bayly

Ride For MND 08

Motor Neurone Disease is a debilitating neurological condition that affect the nerves in the brain and spinal stem that control voluntary muscles. As the nerves die out, the muscles waste and atrophy, spreading from the hands and feet to the arms and legs. Speaking and swallowing can also be impaired. Once the diaphragm is affected, breathing is restricted. Motor Neurone Disease is fatal and has a prognosis of two to five years. There is no cure. There is no treatment. Two months ago I was diagnosed with Motor Neurone Disease. However, there is some hope. Research has been progressing rapidly and the identification of Riluzole as a medication to extend lifespan by three to six months has thrown up many clues and avenues for research into how this disease is acquired and how pharmaceuticals can be used to treat, slow and finally halt the progression of symptoms. Since diagnosis, I have been touched by the number of people who have offered their help and heartbroken by the response I have to give, "There's nothing we can do." Well, I've decided we've got to do something. Helping the researchers of this condition may help me. It may not. But I'd like to help whoever is diagnosed with Motor Neurone Disease in future. On the weekend of 3 and 4 May 2008, I am going to cycle from Amsterdam in the Netherlands to London in the United Kingdom and hoping to be sponsored with all funds being donated to Motor Neurone Disease research. But I need your help. I can't train, organise, fundraise, publicise and, most importantly, ride alone. So, please get in touch, get involved, get training, make a donation and pass this page around!
ALS Nederland (Stichting) logo 2

ALS Nederland (Stichting)

In Nederland lijden tussen de 1000 en 1500 patiënten aan de dodelijke spierziekte ALS (Amyotrofische Laterale Sclerose). Jaarlijks komen er zo'n 500 nieuwe ALS patiënten bij en sterven er ook zoveel. Er is geen medicijn en geen therapiedie de ziekte kan stoppen of genezen. De ziekte tast alle spieren aan, behalve de hartspier en het uitvallen van de ademhalingsspieren is de fatale factor. Dit gebeurt gemiddeld 3 jaar na de eerste verschijnselen. Hoewel er in Nederland jaarlijks meer mensen aan ALS overlijden dan aan AIDS is het een onbekende ziekte. Er wordt er maar weinig onderzoek naar verricht. Het duurt gemiddeld 16 maanden voordat de definitieve diagnose gesteld kan worden en de symptomen verergeren snel. Het inzetten van bepaalde voorzieningen en hulpmiddelen moet dus snel gebeuren. Het komt echter veel te vaak voor dat de aanvragen van voorzieningen en hulpmiddelen niet snel genoeg in behandeling worden genomen vanwege de onbekendheid met ALS van artsen en instellingen.

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