The RYR-1 Foundation

06/23/2026

We are excited to share that a new Phase 2 clinical trial evaluating Surlorian (ARM210, S48168) for adults with autosomal dominant RYR1-related myopathy (RYR1-RM) is now enrolling participants across multiple sites in Europe. 🌍

The study, sponsored by RyCarma Therapeutics, will evaluate whether this investigational treatment may help improve muscle weakness while assessing safety and tolerability.

Adults ages 18 - 65 with a confirmed genetic diagnosis of autosomal dominant RYR1-RM who are able to walk 10 meters with or without a cane may be eligible. To learn more visit: https://clinicaltrials.gov/study/NCT07560020?term=NCT07560020&viewType=Card&rank=1

06/18/2026

We are excited to share that The RYR-1 Foundation received 13 grant submissions from researchers across six countries for our 2026 - 2028 research grant cycle! 🌍💙

We are grateful for the incredible interest in advancing RYR-1-RD research and look forward to announcing the two grant recipients in September. Stay tuned for updates!

06/16/2026

We are incredibly grateful to .E. Reed Construction East Coast for selecting The RYR-1 Foundation as the beneficiary of this year’s golf tournament at The Golf Club at Lansdowne. Thanks to the generosity of sponsors, golfers, and supporters, an incredible $140,000 was raised to support individuals and families affected by RYR-1-Related Diseases.

Thank you to everyone who helped make this event so meaningful and impactful! To read more click the link below! 💙

https://bit.ly/4v0VNxQ

06/12/2026

Join experts from Children's Hospital of Philadelphia Division of Pulmonary and Sleep Medicine on Wednesday, June 3, for a free symposium focused on chest and spine disease in pediatric neuromuscular disorders for healthcare providers.

Providers will hear from leading specialists on assessment, management, and patient outcomes for children with neuromuscular disease.

This event will be offered in a hybrid format, with both in-person and virtual attendance options available. Click below to learn more and register!

https://bit.ly/49cqrMp

06/10/2026

The June edition of The RYR-1 Foundation newsletter is here! Stay up to date on the latest organization news, upcoming events, research updates, and community highlights. Thank you for being part of our RYR-1-RD community! 💙

🔗https://ryr1.org/newsletters/june-2026-newsletter

06/05/2026

A sincere thank you to the Duffy family for sharing their heartbreaking story. Their courage and commitment to spreading awareness about heat-related illness are making a meaningful impact and helping protect others. ❤️

The current issue of MHAUS' quarterly newsletter, The Communicator, features a cautionary story of exertional heat illness for MH-susceptible individuals. Other articles include guidance from an MH expert addressing concerns some MH-susceptible individuals have with dental procedures, tips on managing heat during the summer months, and a collection of the latest medical literature related to MH. Learn more here: https://my.mhaus.org/page/communicatorpast

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