The show’s name may be “Ordinary Joe,” but this NBC drama series is proving extraordinary for its authentic depiction of a character with a disability, portrayed by John Gluck, 13, who has collagen VI muscular dystrophy. The show follows Joe Kimbreau, played by actor James Wolk, in three different…
Millions of people around the country have quit their jobs in search of more fulfilling work, better hours, and work-from-home options in what the media is calling the “Great Resignation.” Some of them, I’m sure, are realizing that they don’t need to work a full 40 hours to accomplish…
My husband, Jason, and my three sons with Duchenne muscular dystrophy — Max, Rowen, and Charlie — just pulled out of the driveway. They are headed to Denver for neuromuscular appointments that start this week. A couple of weeks ago, I shared in a column that I wouldn’t…
Treatment with vamorolone continued to show a good safety profile and sustained efficacy across functional assessments after almost one year in boys with Duchenne muscular dystrophy (DMD), according to 48-week results of the Phase 2b VISION-DMD clinical trial. Data also showed no loss of efficacy in boys who switched…
Author and advocate Elijah J. Stacy is using what he has learned through adversity in battling Duchenne muscular dystrophy (DMD) to help others overcome their own challenges. DMD is a progressive muscle wasting disease that slowly robs a person’s muscle strength. In Stacy’s case, he lost the ability to…
RGX-202, a one-time experimental gene therapy for the treatment of Duchenne muscular dystrophy (DMD), has been granted orphan drug designation by the U.S. Food and Drug Administration (FDA). The designation is given to investigational therapies to treat rare medical conditions or diseases that affect fewer than 200,000 people…
Learning when to say yes and when to say no has been especially important for me as I live with Duchenne muscular dystrophy (DMD). It’s a balance between trying to rise up in my career by accepting story assignments, and saying no to events, friends, and more assignments so that…
I didn’t think we would ever have more children after I found out 10 years ago that I was a carrier of Duchenne muscular dystrophy. But here I am in the homestretch again, in the last trimester of pregnancy. The weeks have been flying by, but my pregnancy…
Santhera Pharmaceuticals and ReveraGen BioPharma are gearing up to submit a new drug application (NDA) asking for U.S. approval of vamorolone as a treatment for Duchenne muscular dystrophy (DMD). The companies announced Tuesday they had completed a pre-NDA meeting with the U.S. Food and Drug Administration (FDA).
Welcome back to my column, “Hidden Truths.” While I tend to write that at the beginning of most of my columns, I genuinely appreciate you checking in. You consciously decided to click on the column and made it a part of your day. You could have chosen thousands…
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