🔥The 9th Round of Easy Loan, Earn $40 Reward is in progress❗️ ⏰ Promotion Period: January 15th - Feburary 15th, 2025 👉 Register now and check more details at gate.io/campaigns/358

🤝 Make a lasting impact—become a sponsor of the 2025 Family Conference & Research Workshop! 👉 ryr1.org/wp-content/upl… 👉ryr1.org/wp-content/upl…

We're looking for inspiring individuals to step up as panel leaders for patient-led panels at the Family Conference! This is your chance to make a meaningful impact and help the RYR-1-RD community. ⏰ Apply by 4/30, & be a part of this important gathering! docs.google.com/forms/d/e/1FAI…

⏳ Deadline Approaching for the #RAREis Scholarship Fund! ⏳ The EveryLife Foundation for Rare Diseases invites individuals 17 years or older to apply for a Fall 2025 scholarship through the #RAREis Scholarship Fund. 🗓 Apply by 4/28 by 2 PM (ET) at RareScholarship.org

🎉 Congratulations to Hichem Tasfaout, PharmD, PhD, MS! Dr. Tasfaout has been awarded The Jaconette L. Tietze Young Scientist Award from the John H. Tietze Foundation Trust! We look forward to the impact his work will have on RYR-1-RD research! Read more: iscrm.uw.edu/meet-the-2024-…

⏰ Tomorrow is the Final Day! ⏰ The EveryLife Foundation for Rare Diseases invites individuals 17 years or older to apply for a Fall 2025 scholarship through the #RAREis Scholarship Fund. 🗓 Apply TODAY by 2 PM (ET) at RareScholarship.org

We invite you to participate in an important survey focused on the Patient Perspective on clinical trial readiness, led by Lizan Stinissen, PhD. 🗓 Survey deadline: 4/30 👉docs.google.com/forms/d/e/1FAI… 👉 Watch the Webinar vimeo.com/1067564950

🚨 Last Day to Apply to Be a Panel Leader at the 2025 Family Conference! 🚨 We’re looking for passionate individuals to step up as panel leaders for the patient-led sessions at the Family Conference! ⏰ Apply TODAY! 👉 Submit your application here: docs.google.com/forms/d/e/1FAI…

🚨Just Dropped! 🚨 The RYR-1 Foundation’s latest webinar, “Insights from Mouse Models: What We’ve Learned About RYR-1 Myopathy” with Dr. Dirksen is now live on our website! 🧬🐭 🎥 Watch it here: youtu.be/EIjOsNUBXhY #strengthinnumbersryr1 #ryr1rd #ryr1 #ryr1community

📰 The May Newsletter is Here! 🌸Spring has sprung, and we’re excited to share the latest updates from The RYR-1 Foundation! 🌟 Don’t forget to register for the 2025 Family Conference — happening this July! 📬ryr1.org/newsletters/ma…

URGENT: Protect Medicaid Congress is negotiating a final federal budget that includes significant cuts to Medicaid! Urge Congress to: ❌ Oppose harmful cuts to Medicaid ✅ Prioritize federal investment in RYR-1-RD research Resources & Guidance: ryr1.org/congressional-…

The countdown is on! 🗓️ Explore the 2025 Family Conference Preliminary Agenda and get excited! 🎁 Be on the lookout for our Memorial Day Weekend Special! Enjoy 5% off registration per person from May 23 – 26—your final chance to save! bit.ly/432Tw9g

🌟 Sponsor the 2025 Family Conference & Make a Lasting Impact! 🌟 Join Eagle Pharmaceuticals, D.F. Dent, and G3 Fabrication in creating unforgettable memories at The RYR-1 Foundation Family Conference! ryr1.org/wp-content/upl…

🎉 Volunteer in the Kids’ Club at the 2025 Family Conference! Teens & young adults—join the fun as volunteers! Help engage kids and make this event even more special. 🤝 🗓️ Volunteer sign-up deadline: 5/17/25 Interested in volunteering? Click here-> ryr1.org/wp-content/upl…

🚨 Urgent Action Needed: Protect Medicaid & RYR-1-RD Research Funding! 🚨 👉 Take action: - Oppose harmful Medicaid cuts - Support funding for RYR-1-RD research The final budget is expected by the end of May, so contact your legislators today! 🔗ryr1.org/congressional-…

🇺🇸 Memorial Day Weekend Special! 🇺🇸 Save 5% per person on registration for the 2025 Family Conference! 🎉 Don’t miss your final chance to save 5% per person on registration for the 2025 Family Conference! —valid Memorial Day weekend only! bit.ly/42srk0N

📚A recent study in the European Journal of Neurology sheds light on the disease trajectories of 142 adults with congenital myopathies! This study highlights the potential under-recognition of RYR-1-RD, revealing that they may be more common than thought! onlinelibrary.wiley.com/doi/10.1111/en…

🇺🇸 Memorial Day Weekend Special! 🇺🇸 Save 5% per person on registration for the 2025 Family Conference! 📅 Register here: bit.ly/42srk0N “There is something to be said for strength in numbers.” – Bob Hanich #strengthinnumbersryr1 #ryr1rd #ryr1 #ryr1community

🇺🇸 Memorial Day Weekend Special! Today is the last day to save 5% per person on registration for the 2025 Family Conference! bit.ly/42srk0N 🎉 A Huge Thank You to Eagle Pharmaceuticals, G3 Fabrication LLC, & DF Dent! We’re incredibly grateful for our generoussponsors!

🎥If you missed last month’s insightful webinar, “Insights from Mouse Models: What We’ve Learned About RYR-1 Myopathy,” you can watch it now! -A new study on a mouse model for RYR-1-related myopathies, findings presented by Robert Dirksen, PhD youtube.com/watch?v=EIjOsN…

🔬 Sponsor the 2025 RYR-1-RD Research Workshop 🔬 Support progress, connect with global experts & patients, and gain meaningful recognition—just like Eagle Pharmaceuticals! ryr1.org/wp-content/upl…