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 major void.
To achieve our mission, the Foundation has several goals:
1. Support Research: The Foundation makes grants to researchers interested in RYR-1 myopathy. As the only organization solely dedicated to RYR-1 myopathy, we hope to be able to promote research in this area. The development of our patient registry will also be key to promoting clinical trials of potential therapies.
2. The vast majority of physicians have never heard of RYR-1 myopathy. The Foundation raises awareness through resources on our website (ryr1.org), including the latest medical literature, as well as direct meetings with physicians around the world.
3. Patient/Family Support and Advocacy: Due to the rarity of RYR-1 myopathy, receiving this diagnosis can be an anxiety-provoking and isolating experience for an affected patient and their families. The Foundation serves as a resource for patients and their families through our website (ryr1.org), other forms of socal media, and family conferences.
The mission of the RYR-1 Foundation is to support research leading to effective treatment or a cure for RYR-1-related diseases.
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The RYR 1 Foundation
P.O. Box 13312
Pittsburgh, PA 15243
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