An expression of the live unlimited spirit, stories and voices of the MDA community
One year ago, if you would have asked me to say the words Duchenne muscular dystrophy, I couldn’t. It was too new, too fresh, too difficult of a reality to process. One year ago I fell to my knees crying and physically shaking with fear, anxiety and anger as I hung up the phone with . . .
In January, MDA launched our first-ever patient experience survey. This tool is designed to provide a statistically accurate snapshot of our community — the people who live with or love someone with neuromuscular diseases – and their needs.
For 36 years, retail partners nationwide have sold iconic paper shamrocks to help kids and adults living with muscular dystrophy, ALS and related life-threatening diseases live longer and grow stronger.
Amin Lakhani is a 29-year-old man with CMT. After graduating second in his high school class of 700 students, getting two degrees from an Ivy League university and landing his dream job at Microsoft, he thought he had finally made it. But something wasn’t right because he felt completely alone. He hadn’t learned how to . . .
MDA is proud to partner with DECA for the 2018 MDA Shamrocks campaign! For every shamrock sold, DECA chapters will be helping kids and adults with muscular dystrophy, ALS, and related diseases live longer and grow stronger.
The Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC), a federal committee that oversees newborn screening, voted today to add spinal muscular atrophy (SMA) to the national list of disorders recommended for screening at birth. Following today’s vote, the Secretary of Health and Human Services (HHS) will make a final decision on whether . . .
Today, the Advisory Committee on Heritable Disorders in Newborns and Children voted to recommend to the Secretary of Health and Human Services that spinal muscular atrophy (SMA) be added to the Recommended Uniform Screening Panel (RUSP), the national list that guides states on which diseases should be tested for at birth. Newborn screening is essential . . .
Kevan Chandler, who lives with SMA and traveled through Europe in 2016 in a backpack, is heading to China. Along the way, he hopes to inspire others and “demonstrate that life is full of possibility and hope.”
MDA’s iconic paper Shamrocks are synonymous with St. Patrick’s Day for millions of Americans who purchase the symbols of good luck at retailers nationwide to help MDA families live longer and grow stronger. But how did this annual tradition get started? Hint: a bright idea and the luck of the Irish.
Justin Rumley is using his entrepreneurial skills to fundraise for ALS research in memory of his father Steve, who lived with the disease. Learn more about Justin’s Coffee for a Cure and ALS Bike Trek MN fundraisers.
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