Press Release
For Immediate Release
July 27, 2024
Contact: Patricia Raffaele, M.A. CAE
724/986-8288
THE RYR-1 FOUNDATION ANNOUNCES NEW SCIENTIFIC ADVISORY BOARD MEMBERS
PITTSBURGH, PA – The RYR-1 Foundation, a rare disease organization based in Pittsburgh, Pennsylvania, announces the appointment of four new members to its international Scientific Advisory Board (SAB).
“The RYR-1 Foundation is the only organization that exists solely to advocate for and serve the needs of individuals and their families affected by RYR-1-Related Diseases (RYR-1-RD),” said Executive Director & Patient Liaison, Lindsay Goldberg, BSN, RN.
The organization works to effectively advance research, raise awareness, and provide outreach to people living with RYR-1-RD. RYR-1-RD are inherited muscle diseases resulting in a wide range of symptoms.
The SAB provides oversight and guidance of the organization’s research initiatives, including grant funding, patient education, and the organization’s Patient-Led International Research Workshops. To date, the organization has provided more than $1.5 million in funding for research.
The newly appointed members of the SAB are:
Minal Jain, PT, AT. DSc, FAPPA, is a research physical therapist and the physical therapy section research coordinator within the Rehabilitation Medicine Department at the National Institute of Health Clinical Center.
Heinz Jungbluth, MD, Ph. D., is a Professor of Paediatric Neurology at King’s College London and Consultant Paediatric Neurologist at the Evelina Children’s Hospital, Guy’s & St Thomas’ NHS Foundation Trust, London, UK, with more than 25 years clinical experience in Paediatric Neurology.
Isabelle Marty, Ph.D., is the Research Director at the Institut National de la Santé et de la Recherche Médicale and leading the research team “Cellular Myology and Pathologies” at the Grenoble Institute of Neurosciences, Grenoble, France. She also serves as co-director of the Grenoble Institute of Neurosciences.
Ichizo Nishino, MD, Ph. D., is the Director of the Department of Neuromuscular Research at the National Institute of Neuroscience (NIN), National Center of Neurology and Psychiatry (NCNP) in Tokyo, Japan.
“We are delighted to welcome these individuals to the SAB,” said President, Board of Directors and Co-Chair of Research, Michael Goldberg, MD, MPH. “Each person brings a wealth of experience and expertise that will contribute to the guidance and oversight of the organization’s research grant funding, our International Research Workshops and our webinars.” As someone who is affected by RYR-1-RD, Dr. Goldberg understands first-hand the importance of research to find treatments and a cure for RYR-1-RD.
The SAB is composed of 15 individuals with expertise related to RYR-1-RD in the following specialities: anesthesia (Malignant Hyperthermia), pathophysiology (Ryanodine receptor), genetics, neurology, and physical therapy. SAB members represent eight countries: Canada, England, France, Japan, Sweden, Switzerland, the Netherlands, and the United States.
For more information about The RYR-1 Foundation and the Scientific Advisory Board visit the website.
