2025 Year in Review
2025 Year In Review
Dear Friends,
As we come to the close of 2025, I want to take a moment to express our heartfelt gratitude for your continued support this year. Your generosity has made a lasting impact, and we simply could not have done it without you.
Because of your support, we achieved what once felt out of reach:
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We hosted our largest Family Conference yet, bringing together participants from 12 different countries. It was a powerful reminder of the strength and resilience of our community when we come together with shared purpose and heart. We also introduced Ryan, our new mascot, and debuted our song “Strength in Numbers,” both celebrating the unity and spirit that define our community. During the Family Conference: Our Community Match Challenge—a $20,000 pledge—was not only met, it was exceeded. Together, we raised a total of $55,500! This outpouring of support strengthened our programs and has reaffirmed the deep belief our community shares in this mission.
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The 2025 Research Workshop united global leaders in science, medicine, and innovation, creating a collaborative space where cutting-edge research met real patient perspectives—pushing the boundaries of what’s possible. We connected our global leaders directly with patients to hear their stories and experiences-bringing humanity to the heart of scientific discovery. Together, they sparked new ideas, partnerships, and a renewed commitment to accelerating meaningful breakthroughs. It was a powerful reminder that every step forward begins with a shared vision of hope.
- Research Grants:
Funded four new research grants totaling $480,000, supporting a diverse group of investigators—including a full professor, early-career faculty, and a postdoctoral researcher—who are advancing the understanding and potential cures for RYR-1-Related Diseases (RYR-1-RD). Two of these initiatives, now six months underway, are already demonstrating promising progress. Collectively, these projects will drive the field toward transformative discoveries in the coming years.
Together, these efforts bring us closer to better treatments, potential cures-and hope for the RYR-1-RD community.
- Expanding and updating our programming focused on patient advocacy and outreach to align with our organizational goals of improving patient education, access to resources, and community partnerships.
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Relaunching our webinar series—tentatively covering topics such as nutrition, the umbrella of RYR-1-RD, treatment options, disability advocacy, and collaboration with other patient organizations. These sessions are designed to inform, connect, and empower our community. Stay tuned for the upcoming schedule and registration details!
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Working together to sustain support of The RYR-1 Foundation— we grow, thrive, and make an impact because of you. Your engagement and fundraising efforts are the lifeblood of our organization. Join us in 2026 by hosting a fundraiser or rallying your network—every action helps shape a stronger future.
Your belief in our mission means everything. Your support has been a steady light, guiding us forward and fueling the work that means so much to our community.
As we look ahead to 2026, we are more committed than ever to finding treatments or a cure. We hope you’ll continue to be part of this journey with us. On behalf of everyone here at The RYR-1 Foundation, thank you for being part of our community. Wishing you and your loved ones Happy Holidays and a wonderful start to the New Year.
To make a gift, please visit our donate page. You can double your impact by using our partnership with Double the Donation to see if your employer will match your gift—turning one donation into two! Simply search your company’s name when you give!
If you’d like to explore more ways to give—including donations of securities, contributions through Donor-Advised Funds (DAFs), IRA, wills, trusts, or legacy gifts—please feel free to contact me via email.
Thank you for being part of this community and for helping make our motto—Strength In Numbers—a powerful reality!
Best Wishes,
Lindsay Goldberg, BSN, RN
Executive Director, Patient Liaison & Co-Founder
The RYR-1 Foundation
