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 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.
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