The RYR-1 Foundation
Transforming The World of the RYR-1 Community
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 RYR-1 Foundation pursues the following goals:
- Support Research: The RYR-1 Foundation makes grants to researchers interested in RYR-1-related diseases. As the only organization solely dedicated to RYR-1-related diseases, 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-related diseases. 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-related diseases, 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.
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.