An expression of the live unlimited spirit, stories and voices of the MDA community
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, . . .
On Sept. 24, we held our annual Becker Muscular Dystrophy (BMD) Conference aimed at connecting families with researchers and other individuals living with BMD. The conference took place in Washington, D.C., and featured a wide range of topics that included understanding the root causes of BMD, how genetics and other factors contribute to the variation . . .
Last week, MDA’s Emergency Preparedness Webinar explored how important it is for individuals with disabilities or with access and functional needs to design a personalized emergency plan for themselves and their families so they are prepared and empowered to handle any kind of emergency or disaster. If you were unable to join last week’s webinar, . . .
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