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

The RYR-1 Foundation is honored to announce the newest members of its Scientific Advisory Board (SAB).

The RYR-1 Foundation is honored to announce the newest members of its Scientific Advisory Board (SAB). The SAB is responsible for setting the research priorities of The RYR-1 Foundation and determining which research grant applications receive funding. Under the leadership of its chair, Dr. Andrew Marks, the SAB is comprised of a group of world-renowned researchers and clinicians who have dedicated their careers to helping those affected by RYR-1-related diseases. With these latest additions, the SAB will continue to be an invaluable resource to not only The RYR-1 Foundation, but also to individuals and families affected by RYR-1.

The newest members of the SAB are listed below. For detailed biographical sketches, please go to: http://www.ryr1.org/scientific-advisory-board.

Livija Medne, MS, LCGC
Co-Director Individualized Medical Genetics Center, Senior Genetic Counselor
The Children’s Hospital of Philadelphia (United States)

Sheila Riazi, MSc, MD, FRCPC
Director of The Malignant Hyperthermia Investigation Unit
Toronto General Hospital (Canada)

Susan Treves, PhD
Professor: Departments of Anesthesia and Biomedicine
University of Basel (Switzerland)

Nicol Voermans, MD, PhD
Neurologist
Radboud University Medical Centre (Netherlands)

Drs. Riazi, Treves, and Voermans as well as Mrs. Medne will join the current members of The RYR-1 Foundation SAB, listed below:

Andrew R. Marks, MD (Chair)
Chairman of the Department of Physiology and Cellular Biophysics
Columbia University (United States)

Carsten G. Bönnemann, MD
Pediatric Neurologist and Senior Investigator
National Institutes of Health (United States)

Robert T. Dirksen, PhD
Chair of Pharmacology and Physiology
University of Rochester Medical Center (United States)

James Dowling, MD, PhD
Neurologist
Hospital for Sick Children (Canada)

Susan Hamilton, PhD
Chair of the Department of Molecular Physiology and Biophysics
Baylor College of Medicine (United States)

About The RYR-1 Foundation

The Pittsburgh, Pennsylvania-based public charity was launched in October 2014 by members of the Goldberg family, who have been affected by RYR-1 muscle disease. It is currently the only organization that exists solely to advocate for and serve the needs of patients with RYR-1 myopathy, the most common cause of congenital myopathy. The mission of The RYR-1 Foundation is to support research leading to effective treatment or a cure for RYR-1-related diseases, to educate physicians about these diseases, and to provide patient/family support and advocacy. The RYR-1 Foundation is a public charity, designated as a 501(c)(3) by the IRS.

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