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 an RYR-1-related disease. Currently, there is no other organization that exists solely to advocate for and serve the needs of patients with RYR-1-related diseases. 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-related diseases. As the only organization solely dedicated to RYR-1-related diseases, 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) Medical Professional Education: The vast majority of medical professionals have never heard of RYR-1-related diseases. The Foundation raises awareness through resources on this website, including the latest medical literature, as well as direct meetings with medical professionals around the world.
3) Patient/Family Support and Advocacy: Due to the rarity of RYR-1-related diseases, 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.
The RYR-1 Foundation is led by a dedicated team of individuals. This includes the Board of Trustees, Scientific Advisory Board (SAB), and Board of Advisors. Daily operations are led by the Program Director.
To read more about the work of the RYR-1 Foundation and to view a promotional brochure, please click HERE or click on the image below.