The RYR-1 Foundation

 

The RYR-1 Foundation is a nonprofit public charity, designated as a 501(c)(3) by the IRS.

 

The Foundation was started by members of the Goldberg Family, who have been affected by RYR-1 muscle disease (myopathy). Currently, there is no other organization that exists solely to advocate for and serve the needs of patients with RYR-1 myopathy. 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 myopathy. As the only organization solely dedicated to RYR-1 myopathy, 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) Physician Education: The vast majority of physicians have never heard of RYR-1 myopathy. The Foundation raises awareness through resources on this website, including the latest medical literature, as well as direct meetings with physicians around the world

 

3) Patient/Family Support and Advocacy: Due to the rarity of RYR-1 myopathy, 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.

 

Our organization is led by a dedicated team of individuals. This includes our Board of Trustees, Scientific Advisory Board (SAB), and Board of Advisors. Our daily operations are led by our Program Director.

 

Of course, none of this will be possible without your help. Any assistance you can provide, financial or otherwise, is greatly appreciated.

 

 

 

 

 

 

 

 

 

 

 

 

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.