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Blake Benton’s earliest memories were his brother declining due to Duchenne Muscular Dystrophy.
About 10 years later, his parents and brother made a bold move. They went to Costa Rica to get an experimental stem cell therapy. And it worked. Ryan was able to live until he was 37 years old with little degeneration caused by his DMD. He died in 2023 of complications from kidney stones.
Ryan and Blake started a non-profit named after a benefit concert they held – Coming Together for a Cure (CTFAC). The goal of CTFAC is to advocate for more stem cell research in DMD and other diseases. There are many challenges, especially in the US.
We discussed:
1. How his parents raised the boys and their sister
2. The impact of Ryan’s DMD on Blake’s life and outlook
3. The good fortune for Blake’s parents to have grown up with a stem cell researcher who thought this could make a difference for Ryan.
Mentioned in this episode:
Sunshine Dreamer Ad
We are excited to share a late-breaking announcement from today’s guest.
Coming Together For a Cure
Invitation to Check Out The Atlas
The Atlas
By Raising Rare5
77 ratings
Blake Benton’s earliest memories were his brother declining due to Duchenne Muscular Dystrophy.
About 10 years later, his parents and brother made a bold move. They went to Costa Rica to get an experimental stem cell therapy. And it worked. Ryan was able to live until he was 37 years old with little degeneration caused by his DMD. He died in 2023 of complications from kidney stones.
Ryan and Blake started a non-profit named after a benefit concert they held – Coming Together for a Cure (CTFAC). The goal of CTFAC is to advocate for more stem cell research in DMD and other diseases. There are many challenges, especially in the US.
We discussed:
1. How his parents raised the boys and their sister
2. The impact of Ryan’s DMD on Blake’s life and outlook
3. The good fortune for Blake’s parents to have grown up with a stem cell researcher who thought this could make a difference for Ryan.
Mentioned in this episode:
Sunshine Dreamer Ad
We are excited to share a late-breaking announcement from today’s guest.
Coming Together For a Cure
Invitation to Check Out The Atlas
The Atlas