Episode 11

Published on:

12th Jun 2021

Brave Pioneers in DMD Terri And Billy Ellsworth - Part 1

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.

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About the Podcast

Raising Rare
Imagine the excitement of becoming a new parent and then within hours finding out your child has a serious developmental disorder.

That is exactly where Sanath Kumar Ramesh found himself in the summer of 2018. One year later, on his son’s first birthday, they found out that their son, Raghav, had an extremely rare mutation of the GPX4 gene. At the time, doctors told them that Raghav may be the only one on the planet with this genetic variant who had lived beyond one month of life. The prognosis is completely unknown.

They were alone.

They were scared.

And then they went into action.

And now they want to share their story.

Every couple of weeks Raising Rare will give you an update on baby Raghav as he grows up. We will also share how Sanath and his wife Ramya are driving toward a treatment for their son. We will explore the science that Sanath is initiating, their efforts to fund that research, and the people they meet along the way. We will also hear how the family adjusts to challenges and changes that they are faced with. Most importantly, we will share the wisdom they gain along the way so that other Rare Parents can learn from their steps and missteps.

We don’t know where this story will go. We do know we want you to join us for the journey.
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About your hosts

Sanath Kumar Ramesh

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Kevin Freiert

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