MDA and RYR-1 Foundation Partner to Advance Research and Care for RYR1-Related Myopathies

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The partnership represents a key step in MDA’s commitment to form collaborative relationships with other organizations working on the same diseases MDA covers.

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“By collaborating with MDA, the RYR-1 Foundation will be able to more effectively advance research, raise awareness, and provide outreach to those affected by RYR-1-related diseases.”

The Muscular Dystrophy Association (MDA) and RYR-1 Foundation today 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 strategic in our efforts to pursue partnerships with respected and capable organizations like RYR-1 Foundation, and we’re excited to collaborate with RYR-1 around our common goals,” said MDA President and CEO Steven M. Derks. “Through our combined efforts, we can speed the pace of discovery, improve quality of life and make a difference in the lives of individuals and families with RYR1-related diseases.”

Central core disease, centronuclear myopathy, multiminicore myopathy and other diseases caused by a mutation in the ryanodine receptor (RYR-1) are among the neuromuscular diseases MDA fights as an umbrella organization with a big-picture perspective on finding treatments and cures for kids and adults whose weakening physical strength and loss of mobility make the most basic daily activities extraordinarily challenging.

The mission of the RYR-1 Foundation is to fund research leading to effective treatments and cures for these same RYR-1-related diseases, and to provide social, emotional, and educational support to affected individuals and their families.

“We are thrilled to have developed a formal partnership with MDA, one of the world’s leading organizations dedicated to helping individuals and families affected by neuromuscular diseases,” said Michael F. Goldberg, M.D., MPH, president of the RYR-1 Foundation. “By collaborating with MDA, the RYR-1 Foundation will be able to more effectively advance research, raise awareness, and provide outreach to those affected by RYR-1-related diseases.”

Partnership goals include working together to enhance the quality, quantity and scope of basic, translational and clinical research; bolstering the scientific review process; and increasing collaboration among investigators.

About MDA
MDA is leading the fight to free individuals—and the families who love them—from the harm of muscular dystrophy, ALS and related muscle-debilitating diseases that take away physical strength, independence and life. We use our collective strength to help kids and adults live longer and grow stronger by finding research breakthroughs across diseases, caring for individuals from day one and empowering families with services and support in hometowns across America. Learn how you can fund cures, find care and champion the cause at mda.org.

About RYR-1 Foundation
The RYR-1 Foundation is a private, nonprofit foundation, designated as a 501(c)(3) by the IRS. The Foundation was started by members of the Goldberg Family, who have been affected by RYR-1 muscle disease (myopathy). Currently, there is no other organization that exists solely to advocate for and serve the needs of patients with RYR-1 myopathy. The goal of the Foundation is to fill this much-needed void. The mission of the RYR-1 Foundation is to support research leading to effective treatment or a cure for RYR-1-related diseases. Learn more at ryr1.org.

MDA Contact:
Roxan Olivas,
MDA Vice President
Public Relations and Community Programs
(312) 260.5923
rolivas(at)mdausa.org

RYR-1 Foundation Contact:
Michael F. Goldberg, M.D., MPH
President, The RYR-1 Foundation
Mike(at)RYR1.org

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Roxan Olivas
Muscular Dystrophy Association
+1 (312) 260-5923
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