Ryan Cooper Foundation
My wife and I started the Ryan Cooper Foundation (501c3) in July of 2009 shortly after our son was diagnosed with Spinal Muscular Atrophy type 1. We started this foundation to help find a cure for this incurable disease. The SMA community has been very instrumental in bringing several treatments to fruition since our child was diagnosed. Nusinersen, marketed as Spinraza, is a medication used in treating spinal muscular atrophy, a rare neuromuscular disorder. In December 2016, it became the first FDA approved drug used in treating this disorder. Nusinersen has orphan drug designation in the United States and the European Union.
We have recently shifted the foundation’s focus and energy on assistive technology solutions for children with SMA.