|
Dear Friends, As we reflect on an extraordinary summer, I’m thrilled to share some exciting updates and heartfelt gratitude from The RYR-1 Foundation. First, congratulations to our 2025 Family Conference Awardees—your dedication and spirit continue to inspire all of us. We’re also excited to officially unveil the new mascot of The RYR-1 Foundation, Ryan! This meaningful ambassador will help build awareness, connection, and pride within our community. A sincere thank you to all of our generous grantors, sponsors, and donors who made the 2025 Research Workshop and Family Conference possible. Your support brought together nearly 200 attendees from around the globe, creating space for powerful collaboration and connection. To everyone who participated—thank you for bringing your voices, experiences, and energy to these unforgettable events. Thank You to the Co-Directors, Planning Committee, and VolunteersNone of this would have been possible without the remarkable dedication of individuals behind the scenes. We extend a heartfelt thank you to the Co-Directors of the Research Workshop for their vision, leadership, and commitment to advancing meaningful progress for the RYR-1-RD community. Your work helped shape a world-class event that fostered collaboration among global leaders in the field:
We are equally grateful to the Family Conference Planning Committee, chaired by Jeni Ryan, Vice President of the Board of Directors. This dedicated team ensured a warm, welcoming, and impactful experience for all attendees:
A very special thank you goes out to Melissa Flaherty, Michelle Archibald, and Lee Noviello for their outstanding contributions.
Finally, I want to extend my deepest gratitude to our exceptional staff:
Your tireless work, behind-the-scenes coordination, and unwavering commitment made both of these events possible. Your leadership continues to inspire and strengthen our community. A Heartfelt Thank You to Our VolunteersIn addition to the Co-Directors, Planning Committee, and staff, we want to extend a sincere and heartfelt thank you to all of the incredible volunteers who generously donated their time, energy, and talents to make the 2025 Family Conference a success. From regristration to logistics, setup to cleanup, and everything in between- your contributions were essential in creating a smooth, welcoming, and memorable experience for all the attendees. Your kindness and commitment truly embody the spirit of the RYR-1-RD community. Thank you to our amazing cvolunteers:
We are deeply grateful for your support and look forward to working alongside you again in the future! Looking Ahead
During The RYR-1 Foundation International Family Conference 2025, our amazing community crushed the $20,000 pledge challenge-raising $35,507 for a total of $55,507! This milestone shoes the strength and generosity of The RYR-1-RD community. Thank you to everyone who donated and supported our mission-together, we’re driving real change. Best Wishes, |
 |
| Lindsay Goldberg, BSN, RN Executive Director, Patient Liaison & Co-Founder The RYR-1 Foundation |
The RYR-1 Foundation recognized several individuals during the 2025 Family Conference for making a significant and lasting impact on the RYR-1-RD community.
Congratulations to the Awardees:
Advocate of Strength Award
Robert Hanich, MD, FACC, Director, Board of Directors
Bob Hanich was recognized for his support of the Malignant Hyperthermia (MH) phenotype RYR-1-RD community, his efforts in congressional advocacy, dedication to research, and generous volunteer work—including helping to plan the 2025 Family Conference.
Advocate of Strength Award
Jennifer Ryan, MBA, Vice President, Board of Directors
Jeni Ryan was celebrated for her early and visionary involvement with The RYR-1 Foundation. As the first non-Goldberg member to serve on the Board of Directors—and now as Vice President—Jeni has played a pivotal role in shaping the organization’s growth. Her and her family’s generous support, leadership in establishing the Family Conferences, and commitment to advancing research through her family foundation have left a lasting impact on the RYR-1-RD community.
Clinician of Strength Award
Oscar H. Mayer, MD
Dr. Mayer was commended for his longstanding dedication to the RYR-1-RD community and invaluable contributions to The RYR-1 Foundation. Since 2016, he has participated in every Family Conference, providing expert lectures and offering one-on-one consultations—both during the events and throughout the years. His compassionate clinical care and leadership in the Clinical Care Guidelines project—and beyond—have made a lasting impact on individuals and families affected by RYR-1-RD around the world.
Guardian of Strength Award
Courtney Woomer, Director, Board of Directors
Courtney Woomer was honored for her unwavering dedication on championing congressional advocacy efforts, fundraising initiatives, and representing the RYR-1-RD community at the 2025 Muscular Dystrophy Association conference.
Strength in Numbers Award
Nicole Becher
Nicole was awarded for her foundational role in the growth of The RYR-1 Foundation. As the first-ever paid employee, Nicole helped lay the groundwork for its operations, programs, and outreach—playing a key role in shaping the organization into what it is today. Her dedication and impact continue to be felt across the RYR-1-RD community.
Strength in Numbers Award
Andrew M. Marks, MD, Member, Scientific Advisory Board
Dr. Marks was appreciated for his exceptional leadership and years of service as the inaugural chair of The RYR-1 Foundation’s Scientific Advisory Board. His guidance, collaboration, and commitment to scientific excellence have been instrumental in advancing RYR-1-RD research and strengthening the organization’s mission.
“We are delighted to pay tribute to our incredible awardees and grateful for their significant contributions, which have been instrumental in the ongoing growth of The RYR-1 Foundation,” said Executive Director, Patient Liaison & Co-Founder, Lindsay Goldberg, BSN, RN.
For more information contact Lindsay Goldberg.
Ryan, The RYR-1 Foundation’s new mascot, was warmly welcomed by the RYR-1-RD community when introduced during the 2025 Family Conference.
Expect to see Ryan featured regularly across the organization’s newsletter, social media, and website, engaging in a variety of activities. Ryan plays the piano, paints, and participates in sports, including adaptive bowling, horseback riding, hockey, and more.
The name “Ryan” is a nod to the ryanodine receptor, which is encoded by the RYR1 gene—the gene responsible for RYR-1-RD. Ryan is depicted holding up one finger to represent the number “1,” while the character’s red cheeks symbolize heat sensitivity, a common symptom among members of the RYR-1-RD community.
The mascot concept was brought to life by dedicated volunteers from the RYR-1-RD community, including Emily Pedersen, MS, CTRS, and Amy Perrin, MS-FNP-C, who serve on the Board of Directors and Board of Advisors, respectively. Parents Macie Soler-Sala and AJ Warren, both creative directors at Weiden+Kennedy and Goodby Silverstein & Partners, respectively, played a key role in Ryan’s development.
Ryan also has a catchy theme song, Strength in Numbers, written and performed by Macie Soler-Sala. The drawings of Ryan were created by Chris Griarusso, a Harvey award-nominated artist and writer known for the G-Man series at Image Comics and Mini Marvels for Marvel Comics.
“We are excited to officially welcome Ryan to the RYR-1-RD community,” said Executive Director, Patient Liaison & Co-Founder, Lindsay Goldberg. “Many in the community can identify with different aspects of Ryan—who embodies the spirit of being active, engaged, and resilient. You’ll be seeing more of Ryan soon!”
Listen to “Strength in Numbers”
For more information contact Lindsay Goldberg.
The RYR-1 Foundation extends its deepest gratitude to the grantors, sponsors, and donors who made the 2025 RYR-1-Related Diseases Patient-Led International Research Workshop: Novel Perspectives, Treatments & Interventions and The RYR-1 Foundation International Family Conference 2025 possible.
“We want to express our heartfelt gratitude to the grantors, sponsors, and donors of both the Family Conference and the Research Workshop. With their support, we were able to bring the world’s leading experts in RYR-1-related diseases together in person, which is invaluable,” said Executive Director, Patient Liaison & Co-Founder, Lindsay Goldberg, BSN, RN. “With this same support, we were also able to offer families and individuals from around the world opportunities to learn, connect, and build lasting relationships during the Family Conference.”
Family Conference Sponsors
Gold
Silver
Bronze
Family Conference Donors
-
Kelly Bender & Scott Stefanides
-
Dr. Kerry Bron & Mr. Robert Levin
-
G3 Fabrication LLC (Grendahl Family)
-
Maria Zuckerman & Matthew Goldberg
-
Dr. Susan Hamilton
-
Diane & Paul Huseth
-
Robert & Mandy Gerstein-Mellett
-
Melanie Anderson Moore
-
Patricia E Powers
-
The Sidow Family
-
Dr. Laurie Jayne Toomajanian and Mr. Randolph Pepper
-
Chris & Kate Reinmiller
-
The Van Nice Family
-
Mary Beth Walsh
-
Courtney & Adam Woomer
-
Carla Zingariello
Research Workshop Sponsors
Platinum
Gold
Bronze
Research Workshop Grantors
Research Workshop Donors
-
Drew Huseth
-
Dr. Laurie Jayne Toomajanian & Mr. Randolph Pepper
-
Dr. Halah Stern
For more information contact Lindsay Goldberg.
The RYR-1 Foundation is proud to participate in this year’s National Donor Advised Funds (DAF) Day, a day of nationwide celebration of community giving through DAFs, on October 9, 2025.
DAFs have become the fastest-growing form of philanthropy in the U.S., with more than three million Americans using them to maximize their charitable impact. Giving through DAFs has surged in recent years, allowing individuals and families to support the causes that matter most to them in a strategic and flexible way.
To learn more about how to create a DAF, donate through a DAF, or get involved in DAF Day, visit DAFday.com.
Stay connected with The RYR-1 Foundation’s social media for updates and easy ways to participate in DAF Day and support the organization’s mission on October 9th!
Explore DAF Day
For more information contact Lindsay Goldberg.
The RYR-1 Foundation is seeking feedback from individuals and families who did not attend The RYR-1 Foundation International Family Conference 2025. This anonymous brief survey is designed to help us better understand the reasons behind non-attendance and how we can make future conferences more accessible and engaging.
Your input is invaluable and will directly shape our planning for the next Family Conference.
The survey will remain open through October 31, 2025.
Thank you in advance for your participation!
For more information contact Lena Leghart.
Join Global Genes on September 15, 2025, from 2:30 pm to 4 pm, ET (US) for Rare Disease Grief Is A Sneaky Bitch: Grieving A Rare Diagnosis. This session is part of the Global Genes RARE Advocacy Exchange, a virtual series designed to empower and equip individuals impacted by rare diseases with knowledge, skills, and confidence to lead and create change.
Global Genes, a 501(c)(3) nonprofit, is dedicated to eliminating the burdens of rare diseases for patients and families globally. This webinar series is open to patients, caregivers, family members, community leaders, industry professionals, and anyone affected by a diagnosis seeking to develop leadership skills.
Lisa Keefauver, MSW, author and podcaster of Grief is a Sneaky Bitch, will moderate the session. Panelists include Daniel DeFabio (a rare dad, Global Genes), Jessica Fein (author, podcast host, Mito Advocate), and Ronda Thorington, LPC (rare mom and parent coach).
This webinar will explore the ongoing grief and complexities of living with a rare disease diagnosis, offering strategies to manage uncertainty, chronic stress, and emotional challenges. Participants will also learn how to find resources, connect with support organizations, and provide compassionate leadership with others navigating similar experiences.
Register for “Rare Disease Grief Is A Sneaky Bitch”
For details on this webinar and the full Rare Advocacy Exchange series, visit Global Genes RARE Advocacy Exchange.
There is still time to participate in the Natural History Study on RYR-1-Related Disorders (RYR-1-RD) being conducted at the National Institutes of Health (NIH). The goal of the study is to better understand the clinical features and progression of RYR-1-Related Disorders (RYR-1-RD) in both children and adults.
Tokunbor A. Lawal, PhD, FNP-BC, an independent research scholar in the Division of Intramural Research at the NIH, is leading the study.
The details are below:
Who Can Participate?
- Individuals 7 years or older
- Confirmed genetic diagnosis of RYR-1-RD
- Resides in the United States
Who Is Not Eligible?
- Individuals with other neuromuscular diseases causing muscle weakness
Interested in Participating?
To learn more or to enroll, contact the NIH Office of Patient Recruitment: call (800) 411-1222 or email ccopr@nih.gov. Please refer to Research Study #001737-CC.
Participation in the study could help advance research and future treatments for RYR-1-RD!
