30 Years of Care
This year marks the Siegel Rare Neuroimmune Association’s 30th anniversary. Our 30th anniversary marks more than just a milestone; being here this long has allowed us to connect thousands of people worldwide who share the same or similar stories. We’re proud to provide support groups, symposiums, disease information resources, and other events that serve our community better.
In celebration of our 30th Anniversary, we’ve also published our 30th anniversary animation which can be viewed here. If inclined, take a few minutes to see how far we’ve come, and what all we’re doing next.
SRNA’s journey is not just about the organization itself, but, more importantly, it is about the stories of the individuals and families whose lives have been touched by these conditions. It’s about the research breakthroughs we’ve witnessed and the societal shifts we’ve influenced in our fight against rare neuroimmune disorders. Our 30th anniversary is a moment to honor our community’s collective challenges and successes. It’s a reflection of our past achievements and, equally, an opportunity to envision and shape the future.
Furthering our mission, we continue to fund research that we believe will someday revolutionize the treatment of these disorders and, we hope, cure them all. Through our James T. Lubin Fellowship, we support the post-residency training of clinicians committed to careers in rare neuroimmune disorders, bridging the gap in access to specialized care, enhancing clinical expertise, and ensuring that more individuals can access knowledgeable and comprehensive treatment. The Pauline H. Siegel Eclipse Fund drives critical research to restore function, identify genes and causation, improve diagnosis biomarkers, and investigate novel therapies—bringing us closer to restoring quality of life and advancing the treatment modalities for those affected by these challenging conditions.
With these ongoing efforts in mind, we’re proud to share our Annual Report, summarizing last year’s achievements and serving as a testament to the efforts made by our small team to connect and support those with rare neuroimmune disorders who live across the globe. In the report, our president, Sandy Siegel, shares how proud and grateful he is for our excellent staff and our many exceptional volunteers. He states: “As a volunteer for the past 30 years, I can attest to the fact that volunteers remain the foundation of our organization. We could not do this work without them, and we are grateful for their generous involvement. You will read about all the important work our volunteers and staff carry out in this annual report. You will also read about our 30-for-30 Anniversary Campaign which makes all this work possible. None of this work takes place without the generous support of our members. Raising money is the hardest work, but we do it because we know that education, support, improved clinical care, and research will not happen without it. We know what needs to be done, so we will continue to work on more effective ways to raise money. We know that we need to increase the donations we receive from our members. We are acutely aware of the struggles faced by those who have one of these disorders or have a child with one of these rare disorders. We have members who are on disability. We know we have members who have challenging financial issues from the burdens of the cost of medical care. That is the reason we are always encouraging our members to make a case to their family and friends that their help is desperately needed. When our members are unable to do so, these are the people who best know your challenges and can make a difference for all of us.”
Our annual report is also a reflection of the generosity of our community, which helps us fund all the resources we develop, the support we offer, and the research we champion.
In celebrating how far we’ve come, and in the hopes that we can continue making progress to support and empower our community, we’d like to invite you to join our 30-for-30 Anniversary Campaign. It is a unique initiative inviting you to engage in monthly giving for the next 30 months. This sustained monthly support will be the driving force behind our ongoing efforts to:
- Connect: Strengthen and grow our support networks, including local groups and family camps, to provide essential connections and resources.
- Care: Continue providing essential resources like our Ask The Expert Podcast Series and educational events, enriching our community’s knowledge and resilience.
- Cure: Accelerate research efforts and nurture the next generation of specialists in rare neuroimmune disorders.
Your participation in our 30-for-30 Campaign goes beyond financial support—it’s a pledge to join hands with those living with these disorders, advancing research, education, and support into the next 30 years, and beyond. We’re grateful to have been part of the lives of so many people, and we’re excited to continue our mission for another 30 years, and another 30 after that.
Here’s to the past 30 years and the many more to come.
