On September 19-21, over 200 of our community members gathered in Columbus, Ohio, to participate in the 2019 Rare Neuroimmune Disorders Symposium (RNDS). Our biennial symposium is a pivotal program for the education and research of rare neuroimmune disorders. During this year’s event, we celebrated the Transverse Myelitis Association’s twenty-fifth anniversary and made an exciting announcement: we’re changing our name! After twenty-five years of growth and progress, SRNA is becoming the Siegel Rare Neuroimmune Association or SRNA.
SRNA President and Founder, Sandy Siegel, and SRNA Board Member, Dr. Benjamin Greenberg, began the conference with the name change announcement. They explained how SRNA is a better representation of the inclusivity and power of our organization. Dr. Greenberg remarked, “The Board, for the last seven years, has recognized that our name was outdated. The Siegel Rare Neuroimmune Association, as a title, did not represent who we were as an organization or who we were as a community… Together, as a community, we are stronger when we all live under one tent.” You can view Sandy and Dr. Greenberg’s talk here.
Following the name change announcement, members of our community who live with each of the rare neuroimmune disorders shared their stories and personal experiences with attendees. The panel provided insight into the different diagnoses, demonstrated the impact these disorders have on them and their families, and overall allowed event participants to connect and identify with others. You can view the member panel recording here.
Dr. Greenberg’s next presentation, “Stronger Together,” demonstrated how each of the rare neuroimmune disorders is connected and the benefit of studying them collectively. Sessions on the diagnosis and treatment of each of the rare neuroimmune disorders followed: transverse myelitis (TM), acute flaccid myelitis (AFM), MOG antibody-associated disease (MOG-Ab disease), neuromyelitis optica spectrum disorder (NMOSD), and acute disseminated encephalomyelitis (ADEM).
After a midday break, sessions continued on Recurrent vs. Monophasic Disorders, Vascular Myelopathies, Myelitis in Systemic Rheumatologic Conditions, and Updates from SRNA. We then heard from a panel of experts on The Future of NMOSD Therapeutics: What Have We Learned? Participants included Drs. Michael Levy and Benjamin Greenberg, two members of SRNA’s Medical and Scientific Council, as well as Dr. Ankur Bhambri of Alexion Pharmaceuticals and Dr. Eliezer Katz of Viela Bio. They discussed recent developments and new medications for the treatment of NMOSD. We ended the first day of the conference with workgroup sessions on Finding Medical Care in Your Area, IEPs and 504s, and ADA, Disability, and Benefits.
The second day of the conference began with talks on research. Dr. Cristina Sadowsky presented on Rehabilitation. We then heard about research on the upcoming stem cell trial to repair the spinal cord in patients with TM and a study investigating a genetic link in individuals with TM. Next, a panel consisting of medical researchers, a member of Centers for Disease Control and Prevention (CDC), and a member of the National Institute of Health (NIH) convened to discuss AFM and the urgent health need to address this growing concern. The panel spoke about their collaborative efforts to begin a multicenter, national research study on AFM with funding from NIH, as well as CDC’s efforts to better address this growing concern. You can view the recording here.
The second half of the day began with presentations on symptom management. Talks continued on Spasticity, Urological Issues, Fatigue, Cognitive Issues, and Pain, Numbness, and Tingling. We learned from Nadia Barakat, PhD, about new imaging techniques for the diagnosis and understanding of rare neuroimmune disorders, which you can view here. Maureen A. Mealy, PhD, RN, BSN, MSCN gave us an update on New Trends in Pain Management, and Anjali Forber-Pratt, PhD presented her research, “How is disability identity formed?” We then heard from a panel of medical experts on Pregnancy and Rare Neuroimmune Diagnoses, followed by a talk on Bowel Management Strategies by Janet Dean, MS, RN, CRRN, CRNP, CRND.
Finally, to close out the day, we heard from four of the James T. Lubin Fellows about their ongoing research and allowed for an open question-and-answer session, which you can view here. SRNA Board Member Dr. Carlos Pardo-Villamizar gave Closing Remarks and rounded out the end of the conference.
The 2019 RNDS was altogether an enriching and successful event. There was palpable energy surrounding the participants as a gathering this large of members of our rare disease community is powerful and unique. You can view the entirety of the talks from the 2019 RNDS in our Resource Library here. If you were unable to attend the event, please stay tuned for the announcement of our next symposium. We hope to see you there!