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 improve the lives of individuals and families affected by RYR-1-Related Diseases (RYR-1-RD) through fostering research, education, advocacy and compassionate support.
To fulfill this mission, The RYR-1 Foundation focuses on three core priorities:
- Support and Advocate for Patients & Families – Empower individuals and families affected by RYR-1-RD by providing trusted resources, fostering meaningful connections, advocating for their needs, and building a supportive global community through webinars, the Clinical Care Guidelines, social media, and Family Conferences.
- Support Research – Fund and advance research focused on RYR-1-RD through research grants, strategic collaborations, and the development of a patient registry that helps facilitate natural history studies and clinical trials.
- Educate Medical Professionals – Increase awareness and understanding of RYR-1-RD by providing evidence-based educational resources, sharing the latest scientific literature, and engaging healthcare professionals worldwide.
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)
