Dear Friends,
I am excited to share with you some news on behalf of the Board of Directors. I want to thank and congratulate both Jeni Ryan and Morton Goldberg, MD, FACS.
Jeni Ryan, MBA has been elected as the new Vice President of the Board of Directors. She also serves as the Chair of The RYR-1 Foundation International Family Conference 2025 Planning Committee. She has an RYR-1-Related Disease (RYR-1-RD) and with her passion, has become a cornerstone within the RYR-1-RD community and The RYR-1 Foundation. I would like to thank Jeni for taking on this new role and her ongoing support, commitment, and passion that she brings to The RYR-1 Foundation!
Morton F. Goldberg, MD, FACS, my beloved father-in-law, has been named Director Emeritus of The RYR-1 Foundation’s Board of Directors after retiring from the Board. Mort is also a co-founder and has been instrumental in the success of the organization. He has given his heart and soul to this organization to make sure that a treatment or cure is found for RYR-1-RD that affects his son, and my husband, President of the Board of Directors Michael F. Goldberg, MD, MPH. We are grateful that Mort will continue to serve as Co-Chair of Research for the organization along with Mike and his ongoing support of this organization. We cannot thank Mort enough for his commitment, time, and dedication.
Best Wishes,
Lindsay Goldberg, BSN, RN
Executive Director & Patient Liaison
The RYR-1 Foundation
The RYR-1 Foundation expresses its deep appreciation to Andrew Marks, MD, the outgoing Chair of the Scientific Advisory Board (SAB). Dr. Marks was the inaugural Chair of the SAB, serving as Chair since 2015, the year the SAB was formed. He provided instant credibility and sustained leadership since the early years of The RYR-1 Foundation.
Dr. Marks also ensured that the organization attracted thought leaders in RYR-1-RD from across the globe to serve on the SAB, attend conferences, and pursue RYR-1-RD research related to the goals and mission of The RYR-1 Foundation. The organization certainly would not be where it is today without his efforts. We are incredibly grateful for Dr. Marks’ invaluable contributions to The RYR-1 Foundation!
The RYR-1 Foundation also congratulates Robert Dirksen, PhD, as the incoming Chair of the SAB. Dr. Dirksen has served on the SAB since its establishment and continues to provide his expertise and leadership to colleagues, young investigators, and The RYR-1 Foundation. The RYR-1 Foundation looks forward to Dr. Dirksen’s contributions as the next Chair of the SAB!
Planning for The RYR-1 Foundation’s 2025 RYR-1-Related Diseases Patient-Led International Research Workshop: Novel Perspectives, Treatments & Interventions is well underway! The 2025 Research Workshop will be held July 23 – 24, 2025.
Planning the Research Workshop are the Co-Directors, composed of members of The RYR-1 Foundation’s Board of Directors, Board of Advisors, and the Scientific Advisory Board. The Co-Directors are: Michael F. Goldberg, MD, MPH; Johanna Lanner, PhD; Livija Medne, MS, LCGC; Payam Mohassel, MD; Jinson Paul, MBA; Emily Pedersen; and Mairéad Ryan, BS, V27.
Testimonials from patients and families from the RYR-1-RD community, a key part of the Research Workshop, will be featured in each session. The agenda sessions are: Diagnosis & Genetics of RYR-1-RD; Clinical Trial Readiness; Novel Insight into RyR1 Interplay and Cell Pathophysiology; RyR1 and Knowledge Gained from Animal Models; and Therapeutic Pipeline.
This Research Workshop is by invitation only and a limited number of people can be accommodated. A manuscript will be produced from the 2025 Research Workshop and will be shared publicly following the Research Workshop.
For more information contact Patricia Raffaele.
The RYR-1 Foundation is excited to announce that registration for the International Family Conference 2025 will open this Fall! An “early bird” special will be offered for those who register before December 31, 2024. Watch for the announcement in upcoming Newsletters and social media posts. The Family Conference will be held July 24 – 27, 2025 in Pittsburgh, Pennsylvania, USA at the Hyatt Regency Pittsburgh International Airport. Please save the date!
New features for the 2025 Family Conference are: three full days instead of two, more opportunities to socialize during activities, additional session topics, more panels with professionals and community members, more opportunities to share personal experiences, a robust Kid and Teen Club, and much more!
For more information contact Lena Leghart.
Receiving a diagnosis of an RYR-1-RD can be an anxiety-provoking and an isolating experience for an affected individual and their family. The RYR-1 Foundation offers a variety of resources for patients and families, including a list of community resources related to RYR-1-RD.
The organization’s Patient & Family Resources web page features a variety of resources including information about related Facebook support groups as well as links to external resources, affiliated organizations, and a disability and future planning presentation.
For more information contact Lena Leghart.
