The RYR-1 Foundation

📬 The July RYR-1 Foundation Newsletter is Here!

Catch up on the latest news from the RYR-1-RD community, including research updates, upcoming webinars, clinical trial and research study opportunities, advocacy news, and ways to get involved.

Whether you're a patient, caregiver, researcher, clinician, or supporter, our July newsletter is packed with information and resources you won't want to miss.

📖 Read the July Newsletter today! - https://ryr1.org/newsletters/july-2026-newsletter

🇺🇸 Happy Fourth of July! 🎆

Today we celebrate freedom, community, and the spirit that brings us together. Wishing you and your loved ones a safe, joyful, and memorable Independence Day filled with laughter, good food, and festive fun.

Happy 4th of July! ❤️🤍💙

Join The RYR-1 Foundation on July 27, 2026, at 1 pm ET for an educational webinar on nutrition and neuromuscular disease featuring Daniela Grote, MS, and Jessica Nieves, MS, RD, LD. 💙

Learn about the important role nutrition can play in supporting overall health and wellness for individuals living with RYR-1-RD and other neuromuscular diseases.

Questions for the speakers can be submitted through July 20, 2026 ❓https://forms.gle/oLCxH1eDZfy2oG1N7
📝 Register Now https://us02web.zoom.us/webinar/register/WN_YSnJOZwQQmW-j0XPgia-Jw

We are proud to share that Dr. Sheila Riazi, a member of The RYR-1 Foundation’s Scientific Advisory Board, co-authored the recently published article, A Proposed North American Approach for Genetic Testing of Individuals at Risk for Malignant Hyperthermia, in Anesthesiology.

The publication highlights updated recommendations for genetic testing and risk assessment for Malignant Hyperthermia (MH), helping support safer care for individuals at risk.

Read the full article to learn more about this important advancement in MH research and clinical care.

https://bit.ly/3RUb6Ko