The RYR-1 Foundation
Transforming The World of the RYR-1-RD Community
The Outlook for the RYR-1-RD Community
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Million Dollars in Funded Research Grants
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The RYR-1 Foundation International Family Conferences
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 (RYR-1-RD). To achieve this mission, The RYR-1 Foundation pursues the following goals:
- Support Research: The RYR-1 Foundation makes grants to researchers interested in RYR-1-RD. As the only organization solely dedicated to RYR-1-RD, we fund, promote, and highlight research in this area. Our ongoing development of a patient registry is also key to promoting clinical trials of potential therapies.
- Medical Professional Education: The vast majority of medical professionals have never heard of RYR-1-RD. The RYR-1 Foundation raises awareness through resources on this website, including the latest medical literature, as well as direct meetings with medical professionals around the world.
- Patient/Family Support and Advocacy: Due to the rarity of RYR-1-RD, receiving this diagnosis can be an anxiety-provoking and isolating experience for affected individuals and their families. The RYR-1 Foundation serves as a resource for patients and their families through this website, other forms of social media, and Family Conferences.
To learn more about the work of The RYR-1 Foundation, please view our informational brochure.
Our Board President
Dr. Michael F. Goldberg is a board-certified neuroradiologist and is the Director of Neuroradiology at the Allegheny Health Network. As someone who is affected by an RYR-1-related disease, Mike understands first-hand the importance of building a community of similarly-affected individuals and families.
Leadership
Executive Director & Patient Liaison (Pittsburgh, PA)
President, Board of Directors (Pittsburgh, PA)
Vice President, Board of Directors (Boylston, MA)
Secretary, Board of Directors (Phoenix, AZ)
Treasurer, Board of Directors (Detroit, MI)
Assistant Treasurer, Board of Directors (Los Angeles, CA)
