PTC Therapeutics shared the latest news today on efforts to make its experimental drug Translarna available in the U.S. for the treatment of some forms of Duchenne muscular dystrophy (DMD). The company reported that the U.S. Food and Drug Administration (FDA) has denied its first appeal that a New Drug Application for Translarna be accepted . . .
MDA resource specialist Mandy Behling used to think that living unlimited meant swimming with the sharks and climbing Mt. Everest. However, she has come to find that living unlimited means more than just traveling the world and seeking out grandiose adventures.
“Now I think that living unlimited means pushing myself just a little harder than I thought possible the day before,” she says.
Jackie Johnson was 18 months old when she was diagnosed with spinal muscular atrophy. She has an associate of applied arts degree in advertising, design and Illustration; a Bachelor of Arts in integrative studies with a concentration in psychology; and a Master of Arts in teaching. She has worked in the education field and as . . .
“What would you do if you weren’t disabled?” Yep — that’s the hard-hitting question everyone and their mother wants to know. Can you say, #cliché? Truthfully, at this point, anyone who’s anyone knows I would twerk. And that’s what I’ve started telling people. But when most people ask, “twerking” isn’t generally the answer they’re hoping . . .
Since my wife passed away in July, there hasn’t been a lot of happiness in my life. It’s just been putting one foot in front of the other and taking everything day by day.
Then the Bank of America Chicago Marathon happened.
Denise and I had planned to run our “golden marathon” on Oct. 9. It would have been our ninth marathon together on the ninth. When she passed in the summer, I wasn’t sure if I’d ever want to use her race chair again.
Albertsons Companies Employee’s Daughter Develops Connection for MDA Summer Camp As the second-largest grocery retailer in the country, Albertsons Companies and the Albertsons Companies Foundation, continue to show their passionate support of the Muscular Dystrophy Association (MDA) across the country for over 20 years through in-store fundraising campaigns with their customers, partnering with Acosta Sales . . .
Melanie Carson has peered into the Grand Canyon and craned her neck looking up at the giant Redwoods of Northern California. She’s felt the mist of waterfalls in Hawaii and gazed at Yosemite’s Half Dome. She’s done it all, and wants to do more. That’s all while living with a rare type of Limb-girdle muscular . . .
Researchers are seeking participants for a trial designed to assess the safety and feasibility of a home-based exercise program in boys with Duchenne muscular dystrophy (DMD). Prior studies in milder forms of muscular dystrophy and in rodent models suggest that resistance exercise may have beneficial effects for maintenance of muscle mass in DMD, but data . . .
Hometown: Brandon, SD Diagnosis: I have Becker muscular dystrophy (BMD). BMD’s onset is usually in late childhood or adolescence. Generalized weakness first affects muscles of the hips, pelvic area, thighs and shoulders. Calves are often enlarged. There can be significant heart involvement. Favorite School Subject/Activities: I am in 3rd grade and my favorite subjects are reading and . . .
What does a small bird have in common with an ALS diagnosis? Artist Erin Brady Worsham eloquently shares. We are crazy about birds at our house. We have seven feeders scattered around our enclosed backyard and two feeders in the front yard. We have been blessed with a number of tall trees in our yard, . . .
