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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: www.ryr1.org/ccg.
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.
August 26, 2021: 2021 RYR-1 Foundation Virtual Run, Walk, or Roll
May 24, 2021: 2022 RYR-1 Foundation International Family Conference Survey
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
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
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
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
