The Little Bird & An ALS Diagnosis

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, . . .

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Meet Jack and Nolan – Twins with DMD [VIDEO]

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:  

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Cooper’s Journey with Spinal Muscular Atrophy

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 – . . .

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The kids thank YOU for another great year of MDA Summer Camp!

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, . . .

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Family Meeting Will Bring Together Individuals with RYR1-Related Muscle Weakness

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 . . .

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