Strongly


An expression of the live unlimited spirit, stories and voices of the MDA community

Western Refining and MDA Join Forces to Help Send Kids with Muscle Disease to Summer Camp

Stores across the Southwest to raise vital funds through MDA’s summer camp mobile program PHOENIX, April 28, 2015 — More than 260 Western Refining convenience stores, including Giant, Mustang, Sun Dial and Howdy’s, throughout the Southwest will raise money to help the Muscular Dystrophy Association save and improve the lives of kids fighting muscular dystrophy . . .

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The Ice Has Thawed: What’s Next in the Fight to End ALS?

By Amanda M. Haidet-Phillips, Ph.D., MDA’s ALS Scientific Program Officer Throughout 2014, everyone from celebrities to school children to MDA’s own CEO could be seen dumping ice water over their heads to raise awareness and dollars to fight ALS. It was a phenomenon that shined an urgently-needed spotlight on a disease that steals everyday freedoms . . .

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Lowe’s Reaches $50 Million Mark in Support of MDA

Stores Nationwide Raise More Than $7.5 Million during 2015 Shamrock Program to Help Improve Lives in MDA Communities #MDAshamrocks MDA’s 2015 National Goodwill Ambassador Reagan Imhoff, along with her parents Jenny and Joe, helped spread awareness to Lowe’s employees and customers about the importance of the MDA shamrock and how funds raised through the program . . .

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Santhera Reports Positive Phase III Clinical Trial Results for Raxone®/Cantana® (idebenone) for the Treatment of Duchenne Muscular Dystrophy

Press Release: Santhera’s Positive Phase III Trial (DELOS) in Patients with Duchenne Muscular Dystrophy Published in The Lancet “This is welcome news for our community,” said MDA Senior Vice President and Scientific Program Director Grace Pavlath, Ph.D. “The need for effective DMD therapies is urgent, and we look forward to the possibility that idebenone may . . .

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Santhera Receives FDA Fast Track Designation for Treatment of Duchenne Muscular Dystrophy

Press Release: Santhera receives FDA Fast Track Designation for Raxone®/Catena® (idebenone) for theTreatment of Duchenne Muscular Dystrophy Statement from MDA Senior Vice President and Scientific Program Director Grace Pavlath, Ph.D.: “This is exciting news for our community. MDA is committed to bringing safe and effective treatments and cures to kids and adults living with neuromuscular . . .

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BioBlast Pharma Receives FDA Fast Track Designation for Treatment of Oculopharyngeal Muscular Dystrophy

Press Release: BioBlast Pharma Announces Granting of Fast Track Designation by the FDA for Cabaletta in Oculopharyngeal Muscular Dystrophy (OPMD) Statement from MDA Senior Vice President and Scientific Program Director Grace Pavlath, Ph.D.: “We are thrilled to see this continued progress from the FDA. OPMD is a rare and debilitating muscular dystrophy for which there . . .

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MDA to Offer Genetic Testing for Limb-Girdle Muscular Dystrophy

MDA, Genzyme and Emory University team up to expand access to genetic testing for accurate diagnosis of limb-girdle muscular dystrophy CHICAGO, March 26, 2015 — The Muscular Dystrophy Association announced today that thanks to a grant from Genzyme, a Sanofi company, and in collaboration with Emory Genetics Laboratory, MDA clinics are now offering genetic testing . . .

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MDA Scientific Conference Update: March 14 Morning Sessions

Saturday morning’s presentations were devoted to the latest news about clinical trials and drug development. Among the highlights: Duchenne muscular dystrophy (DMD): Edward Kaye from Sarepta Therapeutics presented his company’s most recent data about its experimental drug eteplirsen, designed to treat about 13 percent of the Duchenne muscular dystrophy (DMD) population, and discussed plans for . . .

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MDA Scientific Conference Update: March 13 Afternoon Sessions

Friday’s afternoon sessions focused on laboratory studies in animal and cell models of neuromuscular diseases. These kinds of studies are necessary before treatments can be tested in humans. Among the highlights: Spinal muscular atrophy (SMA): Brian Kaspar from Nationwide Children’s Hospital in Columbus, Ohio, presented experiments from his lab to develop gene transfer therapy for . . .

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