July 19, 2019: There have been three recent and exciting developments that demonstrate the continued progress of The RYR-1 Foundation:

1. Dr. Min Li Named to The RYR-1 Foundation’s Board of Trustees:

Min Li, PhD, former senior vice president and global head for neurosciences at GlaxoSmithKline, was just named a trustee of The RYR-1 Foundation. Dr. Li is a venture partner of Lilly Asia Ventures, a firm specialized in biotech and healthcare investments with more than $2 billion under management. Previously, Dr. Li was Professor of Neuroscience at Johns Hopkins University School of Medicine. Awards and recognition for his research achievements include the Helen Hay Whitney Fellow, Sloan Neuroscience Fellow, Klingenstein Neuroscience Fellow, the NIH Shannon Investigator Award, Pfizer AHA fellow, and Established Investigator of AHA. He is an elected fellow of the American Association for the Advancement of Science. The RYR-1 Foundation is lucky to be partnering with Dr. Li, and the leadership at The RYR-1 Foundation looks forward to his guidance on accelerating the development of potential therapies for RYR-1-related diseases. For more information about Dr. Li as well as other distinguished members of the Scientific Advisory Board, please go to: www.ryr1.org/scientificadvisoryboard.

2. NIH Grant for Member of The RYR-1 Foundation’s Scientific Advisory Board:

A prestigious “Bench-to-Bedside” grant from the NIH was recently awarded to Dr. James Dowling, member of the Scientific Advisory Board (SAB) of The RYR-1 Foundation (www.ryr1.org/scientificadvisoryboard). The awarding of this grant was based, in part, on Dr. Dowling’s development a new RYR-1 mouse with severe muscle weakness; this mouse development was funded by a grant from The RYR-1 Foundation.

The NIH grant will support Dr. Dowling and his collaborators in their development of techniques to expedite drug development for RYR-1-related diseases. Other investigators on this recent NIH Bench-to-Bedside grant include Drs. Katy Meilleur and Emily Wires, who are also prior recipients of funding from The RYR-1 Foundation.

This is the second NIH Bench-to-Bedside grant that has arisen from research previously funded by The RYR-1 Foundation, and the organization is proud that it has identified promising research that hopefully will benefit individuals and families affected by RYR-1.

3. Prestigious Research Award to Trustee of The RYR-1 Foundation:

Donald Zack, MD, PhD, a trustee of The RYR-1 Foundation and a world-renowned researcher in retinal eye diseases, has been recognized with the Friedenwald Award at the 2019 Meeting of the Association for Research in Vision and Ophthalmology (ARVO). The Friedenwald Award is considered the world’s most prestigious prize in ophthalmology research. Dr. Zack has been extremely helpful in strategic planning for new research initiatives, and The RYR-1 Foundation is extremely grateful for his service on the Board of Trustees.

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.