Dear Friends and Family of the Leukodystrophy Community,
I have been involved with the Myelin Project and served on its Board of Directors since its inception in 1989, after having met Augusto Odone in 1987. Serving on the Board with a very devoted group of people has been inspirational and I look forward to continuing the work of The Myelin Project. Dr. Ian Duncan, will also continue to be involved in the day-to-day operation of The Myelin Project. He will remain as Chairman of the Scientific Advisory Panel, which is a very specialized and expert group of scientists devoted to our Mission.
My journey with these illnesses began when I lost my little brother to adrenoleukodystrophy in 1960, and my other younger brother to adrenomyeloneuropathy (AMN) in 2001. I have three sons, Michael, Christopher, and Gregory, my eldest Michael unfortunately inherited the genetic defect. He is now 31 years old and currently experiencing symptoms associated with AMN.
Having such a personal connection, I am extremely motivated to identifying future funding sources and maintaining the on-going research projects of The Myelin Project – ultimately finding a cure for these terrible diseases.
With your support and involvement we will continue to fund research to find treatments for all myelin diseases, especially the leukodystrophies which have such a profound impact on patients and families throughout the world.
With hope,
Patti Chapman
President
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