An expression of the live unlimited spirit, stories and voices of the MDA community
Bryan Steward, who lives with Becker muscular dystrophy, is hiking the 500-mile Camino de Santiago in Northern Spain, and he just checked in with us to update us on his progress. Justin Skeesuck and Patrick Gray, two other Camino hikers whose film I’ll Push You will be released in a one-night only screening at select theaters nationwide on November 2 and will benefit MDA, respond to Bryan with memories from their own journey.
MDA National Ambassador Joe Akmakjian debunks a few myths about SMA in recognition of SMA Awareness Month.
Pearl Burgin has faced her share of setbacks as she navigated life with limb-girdle muscular dystrophy, motherhood and higher education as an adult student. But, as she writes in this reflection on going back to school, “I am fortunate to have found a way to become a mom and a scholar. If anyone else is wondering if getting an education while living with a neuromuscular disease and raising a family is possible, I hope they consider their situation, review their options and find resources that will help. Remember not to let doubt hold you back from becoming all that you want to be. Just do what works for you. I challenged myself, worked hard, and it’s paying off. Now for the next goal: grad school.”
Dan Kelleher, an IAFF fire fighter went above & beyond (literally 30 miles beyond) to raise funds for MDA Team Momentum.
Monkol Lek, a researcher at Massachusetts General Hospital and the Broad Institute, both lives with and studies limb girdle muscular dystrophy. He received a research grant from MDA to improve the diagnosis of rare muscle diseases, and this fall he will open his own lab at Yale.
The FDA is reviewing Soliris, now approved to treat MG in Europe. A decision on the drug is expected on or before 10/23/17.
After the news of MDA champion Jerry Lewis’s passing broke Sunday, scores of admirers took to social media to remember the comedian and philanthropist. Here are just a few of the thousands of tweets sent by some of the entertainment business’ brightest stars — and some of MDA’s staunchest partners. Want to add your remembrance to the chorus? Visit our Tributes page, where we are collecting memories for Jerry’s family.
Jerry Lewis, Longtime MDA National Chairman, Telethon Star and Humanitarian, Dies In response to the passing of legendary comedian Jerry Lewis, former national chairman and telethon star of the Muscular Dystrophy Association, the extended MDA family today mourns his loss. Jerry was 91 and lived in Las Vegas, with his wife Sam of 34 years. . . .
Results from an MDA-supported study show that resistance exercise not only is safe, but can help reduce muscle weakness experienced by people with CMT.
Thanks in part to Dutch Bros. generous support, MDA is currently funding 38 active ALS grants, with a total funding commitment of $9.6 million.
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