The RYR-1 Foundation

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The RYR-1 Foundation

This organization is to raise awareness, educate, provide support, and raise funds for research.

10/13/2026

Join us and the Periodic Paralysis Association on November 11 at 11:00 AM ET for:
“Periodic Paralysis & RYR1 Mutations: Understanding the Connection”

Hear from Dr. Stephen Cannon, Dr. Emma Matthews, and Cienna Ditri, with Dr. Tyler Nelson serving as moderator, as they explore the connection between periodic paralysis and RYR1 mutations, current research, and what it means for patients and families.

💻 Don’t miss this informative discussion!
Register here: https://us02web.zoom.us/webinar/register/WN_YKJESJ2GTjGCBUruQO1Q7Q

10/09/2026

A new study published in Neuromuscular Disorders examined how RYR1-Related Malignant Hyperthermia (MH) susceptibility and Exertional Rhabdomyolysis (ERM) affect daily life.

Researchers found that many participants reported fatigue, muscle symptoms, sleep difficulties, and challenges with daily activities and exercise.

These findings highlight the importance of understanding the patient experience and may help inform future clinical trials and meaningful treatment outcomes.
Read Full Article 👉https://www.nmd-journal.com/article/S0960-8966(26)01041-2/fulltext

10/08/2026

A new study published in eClinicalMedicine found that salbutamol may improve motor function in children and teens with congenital myopathies, including participants with RYR-1-RD.

While larger studies are needed, these findings offer encouraging hope for new treatment options for our community. 💙

Read Full Article👉 https://www.thelancet.com/journals/eclinm/article/PIIS2589-5370(26)00439-6/fulltext

10/05/2026

📰 Our October Newsletter Is Here! 💙

Stay up to date with the latest from The RYR-1 Foundation! Our October Newsletter is now available and includes exciting news!

Take a few minutes to catch up on what’s happening across our RYR-1-RD community! 💙

📖 Read the October Newsletter: https://ryr1.org/newsletters/october-2026-newsletter

Thank you for continuing to be part of our community!

10/02/2026

🚨 Quick Update!

Thank you to everyone who let us know the link wasn’t working! We’ve fixed the issue, and it’s now working! 🎉

We appreciate you letting us know and apologize for the hiccup! Thanks for your patience and understanding! ❤️

Did you miss our September Webinar?
No worries! The recording is now available on our website. 🎥

Learn more about “RYR1 Mutations and Statins: What Clinicians and Patients Should Know” and hear from experts Dr. Andrew R. Marks and Dr. Filip Van Petegem, with Dr. Michael Goldberg serving as moderator.

Catch up on this important conversation and learn more about what clinicians and patients should know about RYR1 mutations and statins.

Watch the webinar today! https://vimeo.com/1227100479?share=copy&fl=sv&fe=ci

09/30/2026

Help Shape the Future of RYR-1-RD Research!

The NIH Natural History Study of RYR1-Related Disorders is still enrolling participants! This important study helps researchers better understand how RYR-1-RD affects individuals over time and can help improve care and support the development of future treatments.

Who may be eligible?
• Age 7 or older
• Confirmed genetic diagnosis of RYR-1-RD
• Living in the United States

📞 NIH Office of Patient Recruitment: (800) 411-1222
📧 [email protected]
Reference Study #001737-CC
Every participant helps advance our understanding of RYR-1-RD. 💙
https://bit.ly/4fAMX5r

09/28/2026

🧬 Hope Through Research: Advancing Potential RYR1 Treatments

Every step forward in RYR-1-RD research brings us closer to new possibilities for the RYR-1-RD community. 💙

A renewed NIH grant led by Dr. Robert Dirksen & Dr. James Dowling is advancing innovative approaches to RYR1-related myopathy, including research by Dr. Hichem Tasfaout using a “split-intein” strategy to overcome the challenge of delivering the large RYR1 gene.

This work builds on The RYR-1 Foundation’s ongoing commitment to funding promising research, including a $120,000 grant awarded to Dr. Tasfaout in 2024.
Together, we’re building momentum toward a future with potential treatments for RYR-1-RD.

👉 Read the full press release: https://bit.ly/4i80zqg

09/25/2026

Clinical Trial Opportunity for Adults with RYR1-Related Myopathy

RyCarma Therapeutics is conducting a Phase 2 clinical trial evaluating Surlorian (ARM210, S48168) for adults with autosomal dominant RYR1-related myopathy.

Eligible participants may be:
• 18 - 65 years old
• Have a confirmed genetic diagnosis of autosomal dominant RYR1-RM
• Able to walk 10 meters, with or without a cane

📍 Clinical trial sites are currently enrolling in Europe.

Learn more about the study, eligibility, and participating locations on https://clinicaltrials.gov/study/NCT07560020?term=NCT07560020&viewType=Card&rank=1

09/23/2026

💡 Help Shape Our Future Webinars!

What topics would you like to see covered in a future webinar?

📝 Share your ideas, questions, or speaker suggestions through our Suggest a Future Webinar Topic form.

Your feedback helps us create educational programs that address the needs and interests of the RYR-1-RD community.

👉 Share your ideas today https://bit.ly/4qUtJeE

09/21/2026

📺 Catch Up on Our Latest Webinars!

Missed our July and August webinars? The recordings are now available!

🍎 Nutrition in Neuromuscular Disease
🔥 A New Framework for Assessing and Managing Malignant Hyperthermia Risk

Watch both webinars at your convenience and stay up to date on the latest in RYR-1-related diseases research and clinical care.
👉 Visit https://ryr1.org/video-gallery?filter=webinars

Address

PO Box 13312
Pittsburgh, PA
15243

Website

http://ryr1.org/

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