Siegel Rare Neuroimmune Association

Siegel Rare Neuroimmune Association The non-profit advocating for those those with ADEM, AFM, MOGAD, NMOSD, ON, and TM! There are no membership fees. We provide numerous services for our members.

Founded in 1994 by family members and persons with these diagnoses, SRNA (formerly the Transverse Myelitis Association) was incorporated on November 25, 1996 in the state of Washington and became a 501(c)(3) organization on December 9, 1996. Membership of SRNA includes individuals with these rare disorders, their family members and caregivers, and the medical professionals who treat individuals with these disorders. SRNA currently has approximately 14,000 members from more than 80 different countries and has a large number of support groups across the United States and around the world. Our goal is to advance a comprehensive network dedicated to the care of our members through the development of professionals specializing in these rare disorders, centers of excellence focused on these disorders around the world, and our international community support system. Additionally, we are developing strategic research priorities with our Board of Directors and Scientific Council to further the understanding of the causes of ADEM, AFM, MOGAD, NMOSD, ON and TM, and to develop new acute and regenerative therapies. We offer a support network between persons with these disorders through local support groups located throughout the world. To attract new clinicians and researchers into the rare neuroimmune disorder discipline, we have established the James T. Lubin Fellowship. We publish newsletters to update the community on current research and various community outreach events and opportunities. We support and conduct various educational events through symposia and workshops involving clinicians, scientists, and individuals affected by these disorders for the exchange of information regarding research and treatment strategies, including annual family camps for children with these disorders and their family members.

RNDS has changed a lot over the years.The rooms look different. The research has evolved. New questions have emerged, ne...
10/05/2026

RNDS has changed a lot over the years.

The rooms look different. The research has evolved. New questions have emerged, new discoveries have been made, and new people have joined the rare neuroimmune community.

But some things have remained the same.

We come together to learn from one another, share what we’re discovering, build connections, and keep moving the field forward.

As we get ready for the , we’re taking a look back at some of the moments that have shaped this community along the way.

Want to join us? Find out more at srna.ngo/2026-rnds.

Find your community at the 2026 RNDS. Join us to hear from speakers addressing new NMOSD diagnostic criteria, bladder an...
10/02/2026

Find your community at the 2026 RNDS. Join us to hear from speakers addressing new NMOSD diagnostic criteria, bladder and bowel management strategies, funding and equipment navigation, and life-changing research. Featured speakers include:

- Dr. Dean Wingerchuk
- Janet Dean, MS, RN, CRRN, CRNP
- Sandy Hanebrink
- Dr. Michael Levy

Connect with others who understand. Whether in Dallas or online, you’ll find support and knowledge to navigate your journey.

📅 October 15 to 17, 2026
🌐 Online + in person in Dallas, TX

🔗 Register today at srna.ngo/2026-rnds.

Register for the upcoming PREVAIL event, a live, virtual program featuring an NMOSD specialist and an NMOSD patient on O...
10/01/2026

Register for the upcoming PREVAIL event, a live, virtual program featuring an NMOSD specialist and an NMOSD patient on October 7.

NMOSD specialist Pavle Repovic, MD will share insights into disease management and treatment options, and NMOSD patient Betsy will discuss the importance of a positive mindset and drawing on the support provided by the broader NMOSD community.

Event sponsored by Amgen. Register here: https://bit.ly/4rGckqO

10/01/2026

Connection matters.

The RNDS brings together people diagnosed with rare neuroimmune disorders, families, care partners, clinicians, and researchers for three days of learning, conversation, and community.

Join us October 15–17 in Dallas or online to hear from specialists, explore the latest in research and care, ask questions, and connect with people who understand.

Choose the RNDS experience that works for you.
Register for 2026 RNDS at srna.ngo/2026-rnds

As we close out Spinal Cord Injury Awareness Month, we’re looking ahead at the research helping us better understand wha...
09/30/2026

As we close out Spinal Cord Injury Awareness Month, we’re looking ahead at the research helping us better understand what may be possible in the future.

The Q-Cell Study is exploring whether stem cells could one day help repair spinal cord damage associated with transverse myelitis. Right now, the Phase 1 study is focused on understanding the safety of the cells and the procedure.

SRNA is proud to collaborate on this research, helping make studies like this possible while ensuring the experiences and needs of our community remain part of the conversation.

Learn more about the Q-Cell Study in the link below:
srna.ngo/q-cell

A reminder for anyone planning to join us in Dallas for RNDS 2026: hotel grants are available for those attending in per...
09/30/2026

A reminder for anyone planning to join us in Dallas for RNDS 2026: hotel grants are available for those attending in person.

Grants cover up to 3 nights at the Hyatt Regency DFW Airport, helping make it easier to attend RNDS, connect with specialists, and spend time with others in the rare neuroimmune community.

Funding is limited and available on a first-come, first-served basis. Please register for RNDS 2026 before applying for a grant.

📅 October 15–17, 2026
🌐 Online + in person in Dallas, TX

Learn more and apply at srna.ngo/2026-rnds

09/29/2026

Nervous about attending your first RNDS? Don't worry—Lydia Dubose is so excited to meet you!

At RNDS, you'll learn more about your rare neuroimmune disorder and meet others who share similar experiences.

Join us October 15-17 in Dallas, TX, or online. We can navigate this journey together.

📅 October 15–17, 2026
🌐 Online + in person in Dallas, TX

Learn more at srna.ngo/2026-rnds.

09/28/2026

The list of experts joining us at RNDS keeps getting longer! Will you be there?

Explore sessions on new diagnostic criteria for neuromyelitis optica spectrum disorder, bladder and bowel management, funding and equipment navigation, and research that changes lives. Hear from Dean Wingerchuk, MD; Janet Dean, MS, RN, CRRN, CRNP; Sandy Hanebrink; and Michael Levy, MD, PhD, along with many other RNDS speakers.

This is a chance to learn from experts, ask questions, and connect with others in the rare neuroimmune community.

📅 October 15–17, 2026
🌐 Online + in person in Dallas, TX

🔗 Register today at srna.ngo/2026-rnds.

The 2026 South Central Walk-Run-N-Roll is just a week away!Join us on Saturday, October 3 in Oklahoma City. Whether you ...
09/27/2026

The 2026 South Central Walk-Run-N-Roll is just a week away!

Join us on Saturday, October 3 in Oklahoma City. Whether you walk, run, or roll, your participation brings us together as a community.

Funds raised will support vital research and programs for those affected by rare neuroimmune disorders like ADEM, AFM, MOGAD, NMOSD, ON, and TM. It’s a chance to share stories, make connections, and create awareness.

You’re not alone in this journey. Gather your loved ones and help us make a difference!

Sign up or donate today at http://srna.ngo/2026-sc

Build the knowledge and confidence to advocate for your health. Join us at the 2026 RNDS to hear from speakers addressin...
09/25/2026

Build the knowledge and confidence to advocate for your health. Join us at the 2026 RNDS to hear from speakers addressing quality of life, fatigue, sleep, and cognition, family resilience, and Q Study updates. Featured speakers include:

- Dr. Carlos A. Pardo
- Dr. Elena Grebenciucova
- Dr. Jaclyn Aldrich & Dr. Camille S. Wilson
- Dr. Benjamin Greenberg

Connect with others who understand. Whether in Dallas or online, you’ll find support and knowledge to navigate your journey.

📅 October 15 to 17, 2026
🌐 Online + in person in Dallas, TX

🔗 Register today at srna.ngo/2026-rnds

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Philadelphia, PA

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