Thank You For Your Support

Dear Friends, I am writing to share some wonderful news. My son Devin is walking, running, and can even ride a bike all by himself. That may not seem all that amazing on its own, but Devin’s circumstances are quite unique. Devin lives with Duchenne Muscular Dystrophy (DMD), a terminal muscle disease. It’s a disease … Read more

Debra Miller Interview

This is the first of a new series of interviews we’ll be sharing to help bring our readers closer to others involved in the Duchenne community. I was honored to have the opportunity to ask Debra Miller a few questions about her experience as the President and CEO of CureDuchenne. She was very generous with her time … Read more

CureDuchenne Cares Family Workshop – Milwaukee, WI

We were honored to be the host family for the CureDuchenne Cares family workshop held in Milwaukee, WI. Our family had a wonderful time and learned a lot of very valuable information. The CureDuchenne team is absolutely outstanding! Please attend a workshop if you have the opportunity. They need to know how much we appreciate their … Read more

If I Can

if I CAN if it’s unacceptable, I can confront it. if it’s unbearable, I can endure it. if it’s unbeatable, I can defeat it. if it’s never been done, I can be the one. Christ strengthens me.   I wrote this in the hospital today. I was thinking about everything we’ve been through with DMD, … Read more

Bring Me to the Payers – The Fight for Access to Exondys51

“The Day” On September 19, 2016, the US Food and Drug Administration (FDA) approved the first ever treatment for Duchenne Muscular Dystrophy. Eteplirsen, otherwise known by its brand name Exondys51, was developed by Sarepta Therapeutics. Exondys51 is a novel medicine that uses a technique called exon skipping which allows an error in mutated RNA to … Read more