The RYR-1 Foundation

The RYR-1 Foundation is a nonprofit public charity, 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. 

Mission Statement: The mission of the RYR-1 Foundation is to 1) Support research leading to an effective treatment or a cure for RYR-1-related diseases and 2) Provide education, outreach, and advocacy for individuals and families affected by RYR-1-related diseases. 

To achieve this 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. Developing a patient registry will also be key to promoting clinical trials of potential therapies. 

2) Physician Education: The vast majority of physicians have never heard of RYR-1 myopathy. The Foundation raises awareness through resources on our website, 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, other forms of social media, and family conferences. For more information on the RYR-1 Foundation, please visit: www.ryr1.org

 

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