Dear Friends,
We kicked off 2026 with incredible momentum, raising more than $300,000 to support two additional research grants for the 2026 – 2028 cycle. This milestone brings us one step closer to advancing treatments, and ultimately a cure, for RYR-1-Related Diseases (RYR-1-RD).
Our community continues to demonstrate the power of coming together to create meaningful change, and we are excited for all that lies ahead.
- From Bootcamp to Bedside: Bridging the Clinical and Research Gap Between Exertional Heat Stroke, Rhabdomyolysis, and RYR1 – In March, we hosted a virtual workshop focused on Exertional Heat Stroke, Rhabdomyolysis, and RYR1. The event brought together 29 clinicians, researchers, and affected individuals from North America and Europe to address critical gaps in knowledge and begin developing a medical journal publication aimed at improving understanding and care.
- New Research Grants – Thanks to our community’s generosity, we raised over $300,000 to fund two new research grants focused on: therapies for RYR-1-RD caused by nonsense mutations and therapies for dominant forms of RYR-1-related myopathy. We look forward to our Scientific Advisory Board reviewing applications and selecting projects for funding.
- Webinars – In July, we hosted a webinar on nutrition in neuromuscular diseases led by Jessica Nieves, MS, RD, LD, and Daniela Grote. This informative session provided valuable nutritional guidance and practical recommendations to help support individuals and families affected by RYR-1-RD.
- Fundraiser Benefiting The RYR-1 Foundation – E.E. Reed Construction East Coast selected The RYR-1 Foundation as the beneficiary of its annual charitable golf tournament. Thanks to the generosity of sponsors, participants, and supporters, the event raised $140,000 to advance our mission.
- CCG Update – We are excited to share that revisions to our Clinical Care Guidelines will begin soon, with new sections on Family Planning, Nutrition, and additional topics designed to better meet the evolving needs of our community.
- Upcoming Webinars – We look forward to hosting additional webinars in the coming months, including a webinar on MH genetic testing guidelines and two collaborative webinars presented in partnership with the Periodic Paralysis Association and The Rhabdomyolysis Foundation.
As we look ahead, we remain inspired by the strength, resilience, and generosity of this community. Every fundraiser, research initiative, educational program, and shared story moves us closer to better treatments, improved care, and ultimately a cure for RYR-1-RD.
Thank you to the families, researchers, clinicians, advocates, donors, and partners who continue to support this mission. Together, we are advancing research, building hope, and creating meaningful change.
Ready to make an impact? Visit our Donate Page to contribute.
Thank you for being an essential part of our community. Together, we are proving that Strength In Numbers is more than a motto — it’s a force for change.
Best Wishes,
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| Lindsay Goldberg, BSN, RN Executive Director, Patient Liaison & Co-Founder The RYR-1 Foundation |
