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 Trustees, 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.

Contact: 

P.O. Box 13312, Pittsburgh, PA 15243

© 2014 by The RYR-1 Foundation. 

Phone:

412-529-1482

The information provided by The RYR-1 Foundation on this site or by any links to this site is for educational purposes only. It should not be interpreted as a recommendation for a specific treatment plan, product, medical, or healthcare provider. Use of this web site does not replace medical consultations with a qualified professional to meet the individual’s needs. In addition, medical information can change rapidly; therefore, some information may be out of date, and/or contain inaccuracies or typographical errors. Ultimately, if you have concerns about your health, particularly RYR-1 related diseases, you should consult your health care provider.