A few months ago, I went on a rant about the FDA's failure to approve a drug that would benefit children with Duchenne muscular dystrophy, or DMD, a muscle-wasting disease.…
Talking to the parents or family of a child with a serious illness can be nerve-racking and uncomfortable. Sometimes avoiding the family can seem easier than facing a difficult situation.…
Any of you ever think about running a marathon? I know I have. I've thought about it. Have I run a marathon? NOPE! Sure haven't. That sh*t looks hard. Look,…
On the surface, it seems self-evident that social collaboration can have a positive impact--especially when it comes to Duchenne muscular dystrophy (DMD). Working together with all invested participants to influence…
If you, or someone you love, has Duchenne muscular dystrophy (DMD), then each new possible drug that's brought before the FDA brings with it a sense of hope. Race to…
When you were a kid and planning your future, what events did you imagine? Your first car? Your prom? Your graduation? Your wedding? For this boy with Duchenne muscular dystrophy, he…
If a treatment that would cure me or my child had to use dogs for testing, what would I do? That’s the question I had to ask when I saw…
Netflix recently released an original dark comedy that features a young boy from the UK with Duchenne Muscular Dystrophy whose caregiver (played by Paul Rudd) is new at his job and…
It's no easy battle, but for Tayjus Surampudi and many others, muscular dystrophy is a battle worth getting up and fighting against. Tayjus is a student at Harvard. And if…
For 21-year-old Tanner Pyeatt, the future is uncertain. Diagnosed with Duchenne muscular dystrophy at the age of four, he gradually lost the use of his legs and has been wheelchair-bound since age nine.…
If you have a rare disease with no cure, it’s important to live your future today. Bradon Coy, 10, took that advice by travelling all the way from the United…
It’s Friday afternoon and I’ve been racing around at work all day pecking wildly at my PC to get my stuff done, and just as I was about ready to…
Anyone with rare and neurological disease can relate: there aren't a ton of treatment options and there are almost never any cures for our conditions. We often times just have to treat…
Last year, the FDA approved a record number of new drugs to treat rare diseases, according to the National Organization for Rare Disorders (NORD). In all, 21 "orphan" drugs were…
Q: What do Fergie, Josh Dumal and Scott Niedermayer have in common? A: They are celebrity spokespeople for CureDuchenne a nonprofit organization that raises awareness and funds research to find a…
When Debra Chiabai helped her good-Samaritan dad volunteer for his charity of choice—Muscular Dystrophy Canada—they both thought of it as a simple, nice thing to do. Many years later, that…
Duchenne muscular dystrophy (DMD) may not sound so bad, but it is. What's so fatal about muscle degeneration? you might ask. Well, the heart is a muscle, so there's that. Luckily,…
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