The RYR-1 Foundation
The RYR-1 Foundation is a non-profit, 501(c)(3) public charity, as recognized 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 support research leading to an effective treatment or a cure for 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 this 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 this website, other forms of social media, and family conferences.
Our organization is led by a dedicated team of individuals. This includes our Board of Trustees, Scientific Advisory Board (SAB), and Board of Advisors. Our daily operations are led by our Program Director.