ZNM – Zusammen Stark! e. V. and the RYR-1 Foundation (Pittsburgh, PA, USA) are excited to announce a collaboration to further strengthen their shared interest in helping those with certain forms of congenital muscle disease. Thanks to our donors, ZNM- Zusammen Stark! e. V. could recently donate 8,000 Euros to the RYR-1 Foundation, with those funds earmarked for RYR-1-related research. Approximately 25% of the families associated within our association are affected by RYR-1-related myopathy. It is hoped that this will be one of many future collaborations between the two organizations.
“The slogan of the RYR-1 Foundation is ‘ Strength In Numbers’, and the slogan of ZNM is ‘ Together We Are Strong, ’” said Michael F. Goldberg, MD, MPH, President of the RYR-1 Foundation. “For rare conditions like RYR-1-related myopathy and CNM/MTM-1, it is absolutely critical that organizations work together to accelerate the pace of research funding and, hopefully, expedite the discovery of a cure for rare muscle diseases.”
“In ultra rare diseases like centronuclear myopathies, it is crucial for patient organizations to cooperate with others internationally and also beyond the very specific diagnosis -to see bridges and gates instead of borders and walls,” said Dr. Holger Fischer, President of ZNM. “In this spirit, we, as an association for all centronuclear myopathies, are very happy to extend our cooperation with the RYR-1 Foundation. Together we are strong!”