Illustration of people with disabilities holding hands

A letter from SRNA’s President

Written on 3/31/24


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.

Stacks of envelopes bundled and organized on a garage floor for The Transverse Myelitis Association international mailing in 2002.

This is the floor of Pauline’s and my garage covered with bundles of organized labeled envelopes for an international journal mailing in 2002. This represents only the mailing going out in the United States and to countries outside of Europe. Geoff Treglown and Lew Gray were doing the mailings across Europe, so their envelopes are not represented in this photograph. The TMA was growing rapidly.

The Siegel Rare Neuroimmune Association continues to grow. The interconnectedness of the world has intensified with new technologies. The medical community is developing its understanding of the rare neuroimmune disorders, including the fairly recent diagnoses of MOGAD and AFM. We would love for the numbers to slow down and eventually disappear, but as there is no cure on the horizon for our autoimmune disorders (or any of the many autoimmune disorders), we anticipate that our numbers will grow.

As our membership and community increase in size, so too does the complexity of our work. Educating and supporting 100 people is a very different proposition from being able to support and offer education to our many members who speak many different languages, practice many different cultures, and have access to such varied qualities of health care.

I am so proud and grateful for our excellent staff and our many exceptional volunteers. 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 their work over the past year in this annual report. They continue to develop such creative and effective ways to keep our community informed. They are establishing a number of excellent programs to provide the critical support our community needs. While we know that there is power in our membership as a community together, we are also aware of the great diversity that exists among our members in their symptoms, their quality of life, the languages they speak, and the society and culture in which they live. Our staff is constantly working to create programs that are going to be meaningful and effective for all our members.

You will read about all this important work in this annual report. You will also read about our fundraising campaigns which make 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.

In reading this annual report, I hope that you feel the same sense of pride in our organization’s accomplishments.

Please take care of yourselves and each other,