Strength in Numbers

To learn more about the recently published "Clinical Care Guidelines: What Patients & Families Need to Know About RYR-1-Related Diseases," please visit:

What are RYR-1-Related Diseases?

RYR-1-related diseases are an inherited form of muscle weakness ranging in severity from mild weakness to severe disability. This is due to an inability by muscles to process calcium, a critical component of muscle contraction. Patients are also at risk for a life-threatening complication of general anesthesia (drugs given by a doctor for medical/surgical procedures)


Who gets it?

Patients are born with RYR-1-related diseases, inheriting a defective gene from one or both parents. Click here for more information on genetic testing.


How is it treated?
Currently, there is no treatment for RYR-1-related diseases. This foundation was started to support research, educate patients & families, and raise awareness amongst healthcare providers


March 17, 2021: "RYR1-Related Diseases:" RYR-1 Foundation Announces the Publication of Updated Entry in the National Organization for Rare Disorders (NORD) Rare Disease Database

February 23, 2021: RYR-1 Foundation’s End-of-the-Year Fundraising Campaign Raises over $150,500 for RYR-1-Related Diseases

February 1, 2021:  Announcement of New Multilingual Translations of the Clinical Care Guidelines: What Patients & Families Need to Know About RYR-1-Related Diseases

December 29, 2020: RYR-1 Foundation adds Dr. Payam Mohassel to its Scientific Advisory Board

October 13, 2020:  “RYR-1 Foundation Virtual Run, Walk, or Roll” Fundraiser

September 10, 2020:  Announcement of the publication of Clinical Care Guidelines: What Patients & Families Need to Know About RYR-1-Related Diseases

August 10, 2020: Major NIH Grant Awarded to Members of the RYR-1 Foundation’s Scientific Advisory Board

May 26, 2020: Virtual Lecture Presentation on the “Role of Calcium in RYR-1-Related Diseases” to be hosted on Saturday, June 20, 2020, at 3:00 pm EST

April 9, 2020: Virtual World Premiere of the "Hodgson" Documentary to be hosted on Saturday, April 25, 2020, at 3:00 pm EST


March 24, 2020: The 2020 RYR-1 International Family Conference has been cancelled

March 16, 2020: Coronavirus (COVID-19) & RYR-1-Related Diseases: Webinar with Dr. Oscar "Hank" Mayer

January 7, 2020: 2019: A Year In Review

November 8, 2019: 2020 RYR-1 International Family Conference

August 30, 2019: RYR-1 Foundation Raises $6,150 at Benefit Dinner & Screening of "Hodgson" Documentary

July 19, 2019: Exciting Developments for the RYR-1 Foundation

July 17, 2019: RYR-1 Foundation Benefit Dinner &
Screening of “Hodgson” Documentary

November 19, 2018: Screening of "Hodgson" Documentary: A First Look

June 5, 2018: The RYR-1 Foundation Announces Live-Streaming of the 2018 RYR-1 International Family Conference

May 1, 2018: RYR-1 Foundation Adds New Members to Its Scientific Advisory Board


February 7, 2018: RYR-1 Foundation Announces Collaboration with German Muscle Disease Organization


January 19, 2018: Hike for Team Nolan


January 16, 2018: Israman Race Participants Support the RYR-1 Foundation


October 23, 2017: The 2018 RYR-1 International Family Conference

September 25, 2017: Dinner & Screening of RYR-1 Foundation Documentary


August 10, 2017: "RYR-1-Related Diseases" is now an Entry on the NORD Website


June 13, 2017: Premiere of the RYR-1 Foundation Documentary


April 4, 2017: RYR-1 Foundation Announces Over $500,000 in Research Grant Funding


March 27, 2017: Team Klara Wild Half Run to Support the RYR-1 Foundation



P.O. Box 13312, Pittsburgh, PA 15243

© 2014 by The RYR-1 Foundation. 



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.