The RYR-1 Foundation

[The RYR-1 Foundation @RYR1foundation]

🔬 NIH Study Now Enrolling: RYR-1-RD
NIH Study of RYR-1-Related Disorders is still actively enrolling at the NIH!

👤 Eligible participants:
• Age 7+
• Confirmed RYR-1-RD diagnosis
• US residents
📞[phone] | [email protected]
Study #001737-CC
https://t.co/L9M2gR8pyT

[The RYR-1 Foundation @RYR1foundation]

⏰ Reminder: Upcoming Webinar

Join Triage Health for an important Mental Health Awareness Month webinar! They’ll discuss why uncertainty can feel overwhelming & share practical tools to help manage!

📅 May 27, 2026
🕐 1:00 PM ET
🔗 https://t.co/XxIcx9smeb

[The RYR-1 Foundation @RYR1foundation]

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 & how you can help advocate for policies that reduce prescription costs and improve access to care.
🔗 https://t.co/3T9ZAXZsfm

[The RYR-1 Foundation @RYR1foundation]

📣 In 2026: The RYR-1 Foundation Webinar Series
• Exertional heat illness/heat stroke awareness
• Nutrition for neuromuscular disease
• MH risk & testing approaches
• Statins & RYR-1-RD
• Rhabdomyolysis
• Periodic paralysis & RYR1 mutations

Stay tuned for more details!

[The RYR-1 Foundation @RYR1foundation]

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

📅 May 27, 2026
⏰ 1:00 pm ET
🔗https://t.co/XxIcx9rOoD

[The RYR-1 Foundation @RYR1foundation]

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

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

https://t.co/doEOtXHTkQ

[The RYR-1 Foundation @RYR1foundation]

🚨 Reminder for researchers! We are still accepting applications for the 2026 - 2028 Research Grant Cycle, but the deadline is approaching.

🗓Deadline: 5/16
📢Decisions: 7/17

We encourage eligible investigators to finalize and submit proposals soon. https://t.co/doEOtXHTkQ

[The RYR-1 Foundation @RYR1foundation]

🔬 New Research Spotlight!

A recent study 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.

https://t.co/Fiex3S9zmz

[The RYR-1 Foundation @RYR1foundation]

🔬 Calling all researchers: Don’t miss this opportunity to drive innovation in RYR-1-Related Disease research.

The 2026 - 2028 grant cycle is open for proposals supporting cutting-edge therapeutic development.

🗓 Apply by: 5/16
📢 Decisions by: 7/17
https://t.co/doEOtXHTkQ

[The RYR-1 Foundation @RYR1foundation]

🌼 May Newsletter Now Live!

We’re excited to share the latest updates from The RYR-1 Foundation, including research progress, upcoming opportunities, and ways you can stay involved in advancing treatments for RYR-1-Related Diseases.

📬Full newsletter:
https://t.co/7n0nP5PrJG

[The RYR-1 Foundation @RYR1foundation]

The National Organization for Rare Disorders (NORD) offers tools to help you navigate care, find specialists, access patient assistance, and explore telemedicine options, all of which are designed with patients & families in mind.

Visit NORD: https://t.co/w6m4emkxXD

[The RYR-1 Foundation @RYR1foundation]

Reminder! The deadline to apply for The RYR-1 Foundation’s 2026 - 2028 Research Grant Cycle is approaching.

🗓 Apply by May 16, 2026
Learn more on our website or reach out with any questions!

Learn more on our website: https://t.co/OGtURQDc03
Apply Now: https://t.co/doEOtXHlvi

[The RYR-1 Foundation @RYR1foundation]

Reminder, applications are open for the #RAREis Scholarship Fund!
They will award up to 58 scholarships of $5,000 for Fall 2026 to adults living with rare diseases pursuing education.
🗓 Deadline: 4/28
[email protected] | [phone]
https://t.co/Gh33S9SoEy

[The RYR-1 Foundation @RYR1foundation]

There’s still time to join the Natural History Study of RYR-1-Related Disorders at the NIH!

Open to US residents aged 7+ with a confirmed RYR-1-RD diagnosis

📞 [phone] or [email protected] and reference Study #001737-CC

https://t.co/YoZfecry06

[The RYR-1 Foundation @RYR1foundation]

Reminder! Join Triage Health on April 22 at 1 pm ET for “Medicare Made Simple: A Guide for First-Time Enrollees.”

Don’t forget to register!
https://t.co/OfllboKQD3

[The RYR-1 Foundation @RYR1foundation]

A new study in Annals of Neurology highlights that congenital myopathies may be more common than previously thought and often underrecognized.

Read more: https://t.co/T4yel1rIuh

[The RYR-1 Foundation @RYR1foundation]

Join Triage Health on 4/22 at 1 pm ET for “Medicare Made Simple: A Guide for First-Time Enrollees”.
This webinar will cover key enrollment deadlines, how Medicare works with other insurance, and tips to avoid common mistakes.

https://t.co/OfllboKiNv

[The RYR-1 Foundation @RYR1foundation]

The RYR-1 Foundation is accepting applications for the 2026 - 2028 Research Grant Cycle!

🗓 Deadline: 5/16
📢 Funding decisions: 7/17

Learn more: https://t.co/OGtURQDc03
Apply: https://t.co/doEOtXHlvi

[The RYR-1 Foundation @RYR1foundation]

The #RAREis Scholarship Fund is here!

Open to US residents aged 17+ who are enrolled, planning to enroll, in undergraduate, graduate, or trade programs, either full- or part-time.

🗓 Apply by 4/28

[email protected]
call [phone].
https://t.co/Gh33S9RQP0

[The RYR-1 Foundation @RYR1foundation]

📬 April Newsletter Is Here! 🌸
Spring is in the air, and so is our brand-new April newsletter!
Whether you’re looking for fresh ideas, upcoming opportunities, or a quick catch-up on what’s new this month, you won’t want to miss it.

📖 Read it here: https://t.co/1k8xp7eY3W