Strongly


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

Santhera Seeks Participants for DMD Study, Makes Available EAP and Online DMD Resource

With a focus on respiratory care in Duchenne muscular dystrophy (DMD), Santhera Pharmaceuticals has made available new resources for individuals with the disease. In addition, the company is seeking individuals to participate in a phase 3 clinical trial to test a respiratory drug in people with DMD. SIDEROS trial seeks participants Researchers are looking for . . .

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MDA and ALS ONE Work to Advance ALS Biomarker Research

MDA has awarded a human clinical trial grant totaling $750,000 to ALS ONE to explore the potential for a type of imaging called positron emission tomography (PET) to measure inflammation in the brain that could serve as a biomarker for ALS. ALS ONE is an alliance between four institutional leaders in ALS treatment development: Massachusetts . . .

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13 New MDA Grants Totaling $2.6 Million Push for More Progress

MDA has announced the award of 13 new grants totaling $2.6 million as part of its continued commitment to finding treatments and cures for the diseases in its program. Each of the 13 new grants funds a project that aims to increase our understanding of the causes or underlying mechanisms of neuromuscular disease or potential . . .

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Daniel Buford Leads Fellow Fire Fighters in Filling the Boot — and Then Some

In 2017, the Bryan, Texas, fire department raised a personal record of $42,000 Filling the Boot for MDA. But fundraising is just one of many ways the Bryan fire fighters have positively impacted the lives of MDA families. Their commitment to MDA, which goes back more than 30 years, has expanded significantly since Daniel Buford joined the department five years ago. Daniel, who is the president of IAFF Local 1204 in Bryan, has reinvigorated the fire department’s volunteer efforts and found news ways to engage with the local MDA community…

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Patty Dietering Brings Target’s Fresh Faces to MDA

In March, as Daytona Bike Week 2018 neared, Patty Dietering, human resource executive team leader for the Port Orange, Fla., Target, gathered her teams. Their mission: partner with MDA and Harley-Davidson Motor Co. to raise awareness of MDA and fundraise to continue the fight to end muscular dystrophy, ALS and related life-threatening diseases. Patty manages all volunteer activity for her Target store; in 2017, her team contributed 2,218 hours of volunteer service toward multiple agencies…

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Through MDA Muscle Walk, Mike Wernet Gives Back

If you have ever participated in an MDA Muscle Walk event in Southern California, chances are you have encountered Mike Wernet of San Juan Capistrano. The retired auto mechanic is a mainstay at Muscle Walks throughout the region, having been inspired to volunteer ever since being diagnosed with mitochondrial myopathy in 1996 at the age of 46. Now 67, Mike and his family participate in as many as four walks per year. He has found it a great way to give back to an organization that has played an integral role in not just his own life but also the lives of others…

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Encouraging Results in Phase 1 CALLISTO Trial to Test Omigapil in CMD

A phase 1 trial to test omigapil in congenital muscular dystrophy (CMD) conducted at the National Institutes of Health is complete and data indicate it met its primary objective. Results from the trial, also known as CALLISTO, show a favorable pharmacokinetic profile of omigapil and demonstrated that the drug was safe and well-tolerated in children and . . .

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