The RYR-1 Foundation

05/28/2026

🔬 NIH Study Now Enrolling: RYR-1-RD

The Natural History Study of RYR-1-Related Disorders is still actively enrolling at the NIH. This research helps scientists better understand how RYR-1-RD develops over time and supports future treatments and improved care.

👤 Eligible participants:
• Age 7+
• Confirmed RYR-1-RD diagnosis
• US residents

📞 Learn more or check eligibility:
(800) 411-1222 | [email protected]
Study #001737-CC
https://ryr1.org/wp-content/uploads/2025/05/RYR-1-Related-Diseases-Natural-History-Study-Flyer.pdf

05/27/2026

05/26/2026

⏰ Reminder: Upcoming Webinar

Don’t forget to join Triage Health on May 27, 2026 at 1:00 pm ET for an important Mental Health Awareness Month webinar focused on navigating the emotional impact of uncertainty for individuals living with serious health conditions and their caregivers.

They’ll discuss why uncertainty can feel overwhelming and share practical tools to help manage stress, strengthen self-awareness, and build resilience.

📅 May 27, 2026
🕐 1:00 PM ET

🔗 https://triagehealth.org/webinars/coping-with-stress/ —secure your spot today!

05/22/2026

Join NORD on May 26 from 1–2 PM ET for an important webinar on Copay Accumulator Programs!

Learn how these programs impact rare disease patients and how you can help advocate for policies that reduce out-of-pocket prescription costs and improve access to care.

Register today!
🔗 https://bit.ly/4wJdvrg

05/21/2026

📣 Coming in 2026: The RYR-1 Foundation Webinar Series

We’re excited to share a preview of our upcoming 2026 webinar series, designed for individuals and families impacted by RYR-1-Related Diseases.

Topics will include:
• Exertional heat illness & heat stroke awareness
• Nutrition for neuromuscular disease
• Malignant hyperthermia risk and testing approaches
• Statins and RYR-1-RD
• Rhabdomyolysis (in collaboration with The Rhabdomyolysis Foundation)
• Periodic paralysis & RYR1 mutations (in collaboration with the Periodic Paralysis Association)

Stay tuned for more details!

05/19/2026

🧠 Join Triage Health for an Important Webinar | Mental Health Awareness Month

Triage Health invites you on May 27, 2026 at 1:00 pm ET for a meaningful discussion on navigating the emotional impact of uncertainty for individuals living with serious health conditions and their caregivers.

This session will explore why uncertainty can feel so overwhelming and provide practical strategies to help manage stress, build self-awareness, and strengthen resilience during challenging times.

📅 May 27, 2026
⏰ 1:00 pm ET
🔗 Registration is now open —> https://triagehealth.org/webinars/coping-with-stress/

05/14/2026

⏳ Time is running out! Applications for The RYR-1 Foundation’s 2026 - 2028 Research Grant Cycle are due in two days!

We’re seeking high-impact projects focused on advancing therapies for RYR-1-Related Diseases, including readthrough and variant-agnostic approaches.

📅 Deadline: May 16, 2026
📣 Awards Announced: July 17, 2026

Submit your proposal and help accelerate progress toward treatments and cures.
https://proposalcentral.com/default.asp

05/12/2026

🚨 Reminder for researchers! The RYR-1 Foundation is still accepting applications for the 2026 - 2028 Research Grant Cycle, but the deadline is fast approaching.

This funding supports innovative research aimed at advancing treatments and potential cures for RYR-1-Related Diseases.

🗓 Application Deadline: May 16, 2026
📢 Funding Decisions: July 17, 2026

We encourage eligible investigators to finalize and submit proposals soon. Learn more and apply: https://proposalcentral.com/default.asp

05/09/2026

We are honored and excited to be the beneficiary of this year’s charity golf outing hosted by E.E. Reed Construction East Coast! Thank you for your generosity, partnership, and support of our mission. We can’t wait for a great event!

05/08/2026

🔬 New Research Spotlight!

A recent study in the European Journal of Human Genetics is expanding what we know about Dusty Core Disease and RYR1-related myopathies. Researchers identified new genetic variants, helping explain why symptoms can vary so widely from person to person.

This work brings us closer to earlier diagnoses, improved genetic counseling, and future treatment advances, an exciting step forward for our community.

Read Article Here —> https://www.nature.com/articles/s41431-026-02080-3