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Brave Pioneers in DMD Terri And Billy Ellsworth - Part 1
Episode 1112th June 2021 • Raising Rare • Raising Rare
00:00:00 00:28:57

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Recently we had the honor and joy of speaking with Terry and Billy Ellsworth, a mom and her son who has Duchenne muscular dystrophy or DMD as part of series on families that have made it to the other end of the tunnel.  They were on the front lines of research that has now brought hope to some boys with DMD, including Billy himself.  In this episode, we hear about the diagnostic odyssey that eventually led to Billy participating in a clinical study. 

In part one of this interview, we hear exactly how Billy was diagnosed and how Terri’s intuition told her it might be DMD the first time they noticed Billy was having some issues.  In part one, we focus on Terri’s side of the story.   She uses the phrase “fast forward” quite a bit which emphasizes just how much time is spent waiting for progress.

In part two, we will pick up on Billy’s perspective and his memories of participating in a clinical trial.

Their story is remarkable because the drug Billy received in that clinical trial has drastically changed the progression of his DMD and because he was at the right age at the right time to be enrolled.