Cher Ami, Mon clip Neurofibro est en ligne depuis hier. Il parle de la maladie génétique orpheline, la neurofibromatose, dont je suis atteint et qui m’a paralysé il y a maintenant 10 ans. Il faut absolument se mobiliser. Si vous voulez nous aider, merci de le regarder et de le diffuser à toutes vos connaissances. Pour nous, les malades, c’est vital. Plus le clip sera vu, plus la maladie, sera connue, plus nous aurons de poids dans les médias et surtout plus on aura de chance qu’un médicament soit trouvé. Merci à tous.
Dear Friend,
I posted my clip, Neurofibro, to my myspace page yesterday and I hope you will take a moment to watch. It talks about the genetic, childhood disease, neurofibromatosis, which I have and which has left me paralyzed for 10 years now.
For those of us, who are sick, it is vital to mobilize for a cure. Please, watch my clip and, if you would like to help, please send it on to your friends. With this clip our voice will be heard, and more people, and the media, will learn about this tragic disease. By spreading the word we will have achieved something great, a better chance at finding the cure we so desperately desire.
jest thinking of you and recalling your kindness to me at your jam last winter-you are really a fine player and a wonderful person- MANY BLESSINGS !!! lynnann in portland ory-gun
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