I’m taking action while living with Duchenne MD

In recognition of Duchenne Muscular Dystrophy Awareness Month in September, the Duchenne Muscular Dystrophy Community Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by Duchenne muscular dystrophy, written in their own words. Follow us on Facebook, Instagram, X, and Pinterest for more stories like this, using the hashtag #MDSpotlight, or read the full series.

As a patient diagnosed with Duchenne muscular dystrophy (DMD) before the turn of the century, it has been exciting to watch the field of research bring us to where we are today, with eight therapies approved by the U.S. Food and Drug Administration to treat DMD, and more on the way. It hasn’t come without frustrations for me, though, as I’ve had to wait for drugs to become available to me as a nonambulatory DMD patient.

Colin Werth and his parents, Diane and Alex, are grateful for the advancements within the DMD community. (Courtesy of Colin Werth)

However, I gladly and willingly give to research for the sake of a better life for those who are affected by DMD now and in future generations. My gratefulness to a community that has given so much to me and my family has no doubt fueled my desire to give back.

Over the past two years, I’ve served as president of Parent Project Muscular Dystrophy’s (PPMD) Adult Advisory Committee, known as the PAAC. As a veteran PAAC member for almost 10 years, I’ve witnessed immense growth, and the group has really blossomed over the past few years. Our teen and adult sessions at the PPMD Annual Conference have seen record attendance in recent years. There’s something to be said about strength in numbers, and there is no feeling greater than giving back collectively.

Many PAAC members have been alone on their journey to adulthood with DMD, and it can be very hard with all of the struggles we go through. The goal of the PAAC is to make that journey easier for others.

I wouldn’t wish this disease upon anyone, but I have met so many amazing people in the DMD community. I always return from conferences with a heartwarming feeling. Because of this, I keep returning every year. I’ve formed great bonds with people who now feel like family to me.

Additionally, it’s so nice to know the many scientists and doctors who’ve chosen to dedicate their lives to this community because they want to make a difference. I never imagined 10 years ago that I’d be the PAAC president now, but I’ve been willing to grow and leave my comfort zone for a cause that’s close to my heart. I am truly grateful to have something into which I can put passion and love.

“A grateful mind is a great mind which eventually attracts to itself great things.” — Plato