The RYR-1 Foundation

The RYR-1 Foundation

Transforming The World of the RYR-1-RD Community

The Outlook for the RYR-1-RD Community
$ 0 +
Million Dollars Raised
$ 0
Million Dollars in Funded Research Grants
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.

The RYR-1 Foundation 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.

Read More


President, Board of Directors (Pittsburgh, PA)
Executive Director & Patient Liaison (Pittsburgh, PA)
Director Emeritus (Baltimore, MD)
Development, Public Relations, & Research Director (Pittsburgh, PA)


The RYR-1 Foundation is a non-profit, 501(c)(3), public charity--your donation is tax-deductible.
Host A Fundraiser
Thank you for your interest in raising funds to support The RYR-1 Foundation. Our success depends on the initiative of supporters like YOU.
Close close
Newsletter Registration