A letter from SRNA’s President

It is my pleasure to present to you the 2023 Siegel Rare Neuroimmune Association Annual Report.

Very early on in our history, Jim, Debbie, Paula, Pauline, and I decided that our organization was going to have a membership and that there would be no membership fee. We operated that way from the outset, and we formally incorporated that rule during a public board meeting we held at the 1999 symposium in Seattle. It was a brilliant decision if I do say so myself.

The first consequence of that decision was that we had formed the basis of a community. Being a member of The Transverse Myelitis Association meant that you were on our mailing list and would be mailed all of our publications. It also meant that you would be invited to all our events. As our support groups developed across the US and around the world, having a membership allowed our support group leaders to find our members in their states or countries, which facilitated their activities to offer education and support to their local members.

Another profound consequence of the membership decision was that we positioned ourselves to make research possible on ADEM, NMOSD, ON, TM, and then MOGAD and AFM. We recognized very early on that the only way medical professionals were going to begin to understand these rare disorders was if people who were diagnosed with them were able to share their experiences. Sharing information could take the form of survey data, imaging, or bio-samples. If our members had not been willing to share, those who diagnose and treat these disorders would never have begun to understand the causes, nor the most effective acute treatments nor the best symptom management strategies. We wanted our membership to recognize and appreciate that they were the ones to hold the key to all this critical information that may ultimately unlock the possibility of cures.

By having this membership, we were able to educate those in our community about the importance of their participation in research. We are in the unique position of helping medical researchers recruit for their important studies. Over the years, we’ve hired expert staff to do our own research and contribute to the body of knowledge about these rare disorders. We are doing as much as possible to support this research through our James T. Lubin Fellowship Program and the Pauline Habib Siegel Eclipse Fund. We are also facilitating both clinical care and research through our Centers of Excellence Program.

I very vividly remember when The Transverse Myelitis Association had 102 members. That was the number of invitations I mailed out for the education program that was co-sponsored by the National Organization of Rare Disorders that was held in Columbus, Ohio. That was in the mid-1990s. Through the efforts of Jim Lubin, our membership grew fairly rapidly. Jim first set up our website and then created an electronic membership form and process that facilitated people finding us where internet access was available. We were always an international organization, although at that point that designation was simply since we had some members who lived in Canada. Through Jim’s work, our membership in the US and around the world grew very rapidly.

The TMA was benefiting from the accelerated communications made possible by the internet, as well as the development of social media companies such as AOL. In 1999, Dr. Douglas Kerr established the Transverse Myelitis Center of Excellence at Johns Hopkins Medical Center. In 2002, he and his colleagues published the first diagnostic criteria for transverse myelitis. There were critical implications of this development on research on the rare neuroimmune disorders. The immediate impact of these criteria was that more neurologists and neuroimmunologists were able to recognize transverse myelitis, as well as develop a better understanding of the differential diagnoses. Thus, as we were easier to find from Jim’s efforts, our numbers were growing from better diagnoses resulting from Doug’s efforts.

In 2023, the SRNA had 548 new members. Of those, 352 were people with one of the disorders, 175 were relatives or caregivers and 41 were medical professionals. There were 20 people who became members who did not fit into the three categories. Of the 352, 49 had ADEM, 8 had AFM, 108 had MOGAD, 67 had NMOSD, 4 had ON and 236 had TM. There were 76 people who had none of these disorders. These are likely people with neurosarcoidosis, or one of the myriad of myelopathies, such as spinal strokes or other vascular problems. That we have these 76 people who fall outside of our disorder categories represents a core value of our organization and the reason why The Transverse Myelitis Association had a membership that included people with ADEM, NMOSD and ON. In time, we came to recognize the power that comes with including these rare disorders under one umbrella. At our inception, we were highly sensitized to the experience people have who are diagnosed with a disorder they’ve never heard of, nor know anyone who has it. We were going to become and have been a community who offers a home to those who have no other space to find the support they desperately need.