Josh 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
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
I don’t always do a great job at recognizing all the amazing things that happen in life, especially day-to-day as they occur. Today however, something happened that left me in complete shock. Devin and I were at the University of Florida for the Imaging DMD study. Devin was in a room going through a series … Read more
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 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
“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
This is a selection of some of the videos we’ve made or have been included in.
We put together a video to share the 26 most impactful moments in our life, related to muscular dystrophy, over the past year. This is something we plan to do every year about a week before the Chicago Marathon. We hope you enjoy the video. It’s been a wild ride!
I just completed my first official race for Team Momentum! I finished a 10k at the Brewers Mini! We had a very busy day the day before the race. The day started early in Chicago. I went to Lurie Children’s Hospital for my weekly appointment. Then we drove to the Milwaukee area to the Children’s … Read more