MDA and Answer ALS Partner to Develop the Most Comprehensive ALS Dataset to Date

MDA recently announced that it has awarded a research infrastructure grant totaling $550,000 to Jeffrey Rothstein, M.D., Ph.D., Professor of Neurology and Neuroscience and Director, Robert Packard Center for Answer ALS Research, Johns Hopkins University School of Medicine. Answer ALS is a nationwide consortium assembling one of the most comprehensive clinical, genetic, molecular, and biochemical . . .

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Strength, Science, and Stories of Inspiration (SSSI) and MDA announce the second SSSI-MDA fellowship for graduate students and postdoctoral scholars

The Muscular Dystrophy Association is pleased to announce that it is once again partnering with Strength, Science, and Stories of Inspiration (SSSI) to support the second SSSI-MDA fellowship. This fellowship, aimed at graduate students and postdoctoral fellows that already have salary support in their existing labs, will provide additional research funding to allow those individuals to . . .

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Sarepta Therapeutics Announces Clinical Hold of Phase 1/2a DMD Micro-Dystrophin Gene Therapy Trial

Late on Wednesday, Sarepta Therapeutics announced that the Food and Drug Administration (FDA) has placed a clinical hold on their Phase 1/2a Duchenne Muscular Dystrophy (DMD) Micro-Dystrophin Gene Therapy Trial due to contamination of the manufacturing lot with plasmid DNA. No safety issues were reported for participants in the trial. Sarepta has stated that they . . .

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MDA Funds Creation of Limb-Girdle Muscular Dystrophy Clinical Research Network to Speed Therapy Development

The Muscular Dystrophy Association recently awarded an MDA clinical research network grant to Nicholas Johnson, vice chair of research and associate professor of neurology at Virginia Commonwealth University in Richmond, to establish the Limb-Girdle Muscular Dystrophy (LGMD) Clinical Research Network. The investment, totaling $700,000 over two years, supports seven centers with expertise in LGMD research . . .

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Sailormen Inc. Popeyes Raises More Than $1 Million for MDA

On May 10, Sailormen Inc., one of the largest domestic franchisees of Popeyes Louisiana Kitchen restaurants with 132 locations in five states, announced that its annual MDA Golf Classic and 2018 Appetite for a Cure program raised a record-breaking $1,007,789 for MDA to transform the lives of individuals with muscular dystrophy, ALS and related neuromuscular . . .

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Clinical Trial Alert: Orion Pharma Seeks Participants for a Phase 3 ALS Study

Researchers at Orion Pharma are looking for participants with ALS (amyotrophic lateral sclerosis) to participate in the REFALS Phase 3 study. The study is designed to help researchers evaluate the effects of oral levosimendan (ODM-109) on respiratory function in patients with ALS. Participants will be randomized to receive either levosimendan or placebo to determine whether . . .

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Critical Biomarker Development for CMT Receives $1 Million Boost from MDA

The Muscular Dystrophy Association recently awarded an MDA human clinical trial grant for the development of a critical biomarker for Charcot-Marie-Tooth disease (CMT) to Mary M. Reilly, professor of clinical neurology and consultant neurologist, UCL Institute of Neurology and National Hospital for Neurology and Neurosurgery, London. The investment, totaling $1 million over three years, will . . .

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“Another Fatal Case of ALS”: A Message from the CDC/ATSDR

Former NFL great Dwight Clark died from ALS (amyotrophic lateral sclerosis) on June 4, a little more than one year after revealing he had the disease. Clark was immortalized when he caught the winning touchdown pass in the NFC Championship Game in January 1982, sending the San Francisco 49ers to their first Super Bowl. The . . .

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