Time Is Muscle

Hope for Samy Foundation

Welcome to Hope for Samy Foundation. When Samy was diagnosed with LGMD R5/2C at 22 months old, we were told there was nothing to be done. No treatment. No cure. Go home and enjoy the time while he's still walking.

We refused to accept that — not just for Samy, but for every family sitting in that same room.

In Canada, families facing ultra-rare pediatric neuromuscular diseases have almost no dedicated support infrastructure, no national care pathway, and no approved treatment options anywhere in the world. They navigate a system that was not built for diseases this rare, largely on their own, often without ever meeting another family that understands what they are going through.

Hope for Samy Foundation is a Canadian nonprofit advancing awareness, advocacy, and equitable access for children affected by LGMD2C and rare neuromuscular diseases.

Samy is our son. He is why we started. The families who will receive a diagnosis tomorrow, next year, and in the years ahead are why this foundation exists.

Progress happens when people refuse to wait for it. We are not waiting.