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 Directors, Scientific Advisory Board (SAB), and Board of Advisors. Daily operations are led by the Program Director.
To get a more in-depth overview written by Dr. Michael Goldberg, MD, MPH for NORD, please click HERE.
For those people who would like to make a donation to the foundation, please click here or the button below.
WE WELCOME YOUR DONATION
To read more about the work of the RYR-1 Foundation and to view our promotional brochure, please click HERE or click on the image below.