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 . . .
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 . . .
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, . . .
Allison Willis and her sons, Nolan and Jack (15), who participated in the clinical trials for the exon-skipping drug Exondys 51 (eteplirsen), react to the FDA’s approval and expanded use of the drug. The drug treats Duchenne muscular dystrophy. Watch the video of their story and the groundbreaking clinical trial that made history:
A couple of years ago MDA got to know the Somers family… While Crystal and Cooper continue to mourn the loss of an incredible husband and father, they are able to focus on and appreciate the positives in their life now. Cooper recently turned 6, started first grade and is ready – and excited – . . .
MDA Lock-Up Jailbirds can earn their chance to win a pair of roundtrip airline tickets, Beats wireless headphones or an iPad Air 2. For every $100 Jailbirds raise between now and Friday, November 18 they will be automatically entered into the drawing.* Jailbirds are encouraged to track their progress at their Participant Center, and check . . .
Again in 2016, MDA Summer Camps have provided more than 3,500 kids with muscular dystrophy and related muscle-debilitating diseases “the best week of the year!” At MDA Summer Camp, kids live beyond limits in a place where anything is possible. It’s a week where they’re been free to enjoy adventures like horseback riding, swimming and fishing, and they reconnected with friends, . . .
As night fell on Florida’s Jupiter Lighthouse, someone turned on the lights. But on that evening in August, the light wasn’t meant to guide ships to safe harbor or warn of dangerous reefs. Instead, the lighthouse was glowing lime green to raise awareness of muscular dystrophy. It was an emotional moment after a hard-fought battle . . .
We’re halfway through the summer of Living Unlimited, and so far, you’ve shared nearly 2,000 images showing us—and the world—how you defy daily challenges to live life to its fullest each day, whether you live or love someone with a muscle-debilitating disease or face other limits, both perceived and real, that make some things seem . . .
Individuals with central core disease (CCD), centronuclear myopathy (CNM), multiminicore myopathy (MMC) or other diseases caused by a mutation in the ryanodine receptor (RYR-1) are invited to attend the first-ever RYR-1 International Family Conference, organized by the RYR-1 Foundation, July 22-24, 2016, in Baltimore. At the conference, you will be able to view presentations by . . .