MDA and RYR-1 Foundation Team Up in the Fight Against RYR1-Related Myopathies

MDA and RYR-1 Foundation have announced a partnership aimed at advancing research and clinical care, raising awareness and improving education of patients, medical professionals and the public about RYR1-related myopathies. The partnership represents a key step in MDA’s commitment to form collaborative relationships with other organizations working on the same diseases MDA covers. “MDA is . . .

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MDA Grants Work to Find Breakthroughs Across Diseases

Since its inception, MDA has invested more than $1 billion in neuromuscular disease research to uncover new treatments and cures. In 2016 alone, MDA awarded 66 new research, development and research infrastructure grants with a total funding commitment of more than $17 million. These and other MDA grants fund research projects designed to uncover the . . .

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New Research Grants Aim to Help MDA Families Live Unlimited

  This summer MDA challenged our families, friends, sponsors, staff and others around the nation to share their stories about living life without limits despite the challenges of neuromuscular disease. Some shared moments tied to pursuing an education or career that was thought to be out of reach. Some talked about skydiving, hiking or running . . .

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Family Meeting Will Bring Together Individuals with RYR1-Related Muscle Weakness

Individuals with central core disease (CCD), centronuclear myopathy (CNM), multiminicore myopathy (MMC) or other diseases caused by a mutation in the ryanodine receptor (RYR-1) are invited to attend the first-ever RYR-1 International Family Conference, organized by the RYR-1 Foundation, July 22-24, 2016, in Baltimore. At the conference, you will be able to view presentations by . . .

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CCD – Montserrat Samso, Ph.D.

Montserrat Samso, assistant professor in the department of physiology at Virginia Commonwealth University in Richmond, was awarded an MDA research grant totaling $300,000 over three years to generate a crystal structure of the ryanodine receptor (RyR1), an intracellular calcium channel, at high resolution and in different conformational states, with and without disease-causing mutations, to allow . . .

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ALS – Jeffrey Rothstein, M.D., Ph.D.

Jeffrey Rothstein, professor of neurology and neuroscience at Johns Hopkins University School of Medicine in Baltimore, was awarded an MDA research grant totaling $300,000 over three years to elucidate the mechanisms underlying ALS (amyotrophic lateral sclerosis) caused by mutations in the C9ORF72 gene. Rothstein will use ALS patient-derived stem cells to investigate the role of . . .

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New York Metro Good Will Ambassador

Adelina Rosso, Age 8 Manhattan, NY Home and Family Adelina lives with her father John, mom Lucinda and her older brother John Robert. Diagnosis Adelina was diagnosed at the age of 3 with Central Core disease. The disease is named for damaged areas within muscle cells (the “cores”), where the filament proteins are disorganized and . . .

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