COVID-19 has forced families around the world to stay indoors and spend a lot more time together. This will not change for quite a while, especially for those of us with chronic conditions who need extra protection. As I wrote in my previous column,…
I’ve always sought silver linings, including in this season of social distancing. Many people now exclusively use technology to communicate with family, friends, and co-workers to reduce viral spread. Instead of hanging out at inaccessible places, people connect from the comfort of home. Self-quarantine has yielded plenty of valid complaints,…
The Living Rare, Living Stronger Patient and Family Forum, originally set for May 14–16 in Cleveland, Ohio, has been postponed until July 18–20 because of the coronavirus disease COVID-19 pandemic. The event’s sponsor, the National Organization for Rare Disorders (NORD),…
This week, I celebrate my one-year anniversary of writing columns for BioNews Services. A lot has happened in that year: I graduated from college, interned at The Washington Post, and secured a full-time newswriting position at BioNews. I’ve laughed a…
When Shawn Welch was diagnosed in 1979 with facioscapulohumeral muscular dystrophy (FSHD), his doctor at the University of Connecticut John Dempsey Hospital told him he’d probably die before his 30th birthday. “I thought the end was going to come,” Welch…
If we lived in a fair world, Duchenne muscular dystrophy would not exist. Unfortunately, life isn’t fair, and I was diagnosed with the muscle-wasting disease 18 years ago. Even with a bleak future, there’s still something I can do about it. I can refuse to…
Starting a 501(c)(3) tax-exempt nonprofit isn’t easy, but the National Organization for Rare Disorders gave a few tips for those looking to begin the complex process in its Feb. 20 webinar. William Whitman…
Adults with Duchenne muscular dystrophy (DMD) should help younger generations through the difficult parts of growing up with a rare muscular disease. They need someone in a similar situation to look up to, relate to, and learn from. I recently met a high schooler who…
The U.S. Food and Drug Administration (FDA), a vast government bureaucracy, employs about 17,500 people and had a budget of $5.7 billion in 2019. Yet even with its enormous resources, the FDA these days relies more and more on patients to…
Life with Duchenne muscular dystrophy is far from predictable. We can’t foresee how our bodies will change. When I turned 18 (I’m 23 now), I didn’t know that five years later, I would need help showering and getting off the…
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