Reflections from The 2016 Regional Rare Neuroimmune Disorders Symposium
About 75 individuals gathered together at the University of Colorado for a day of education and networking at the 2016 Regional Rare Neuroimmune Disorders Symposium in Aurora, CO on August 13, 2016. The goal of this conference hosted by The Siegel Rare Neuroimmune Association (SRNA) and The University of Colorado, Denver was to provide an opportunity to bring together the community of individuals diagnosed with TM, AFM, NMOSD and ADEM, their families, caregivers, and medical professionals interested in these disorders to exchange information regarding diagnosis, research and treatment strategies. The diverse audience provided insight and perspective on the many facets of rare neuroimmune disorders and how they can impact quality of life. For some attendees, this was the first time they had met others with a similar diagnosis and also met medical professionals interested in these disorders!
Dr. Teri Schreiner opened the symposium with an overview of Acute Flaccid Myelitis (AFM) and Acute Disseminated Encephalomyelitis (ADEM), followed by a discussion on NMOSD and TM by Dr. Jeffrey Bennett. This led the attendees into an informative diagnosis and treatment discussion panel on rare neuroimmune disorders. Dr. Sara Qureshi, who completed her neuro-immunology Fellowship at University of Texas Southwestern and is currently at the Billings Clinic in Montana, joined us to provide an understanding of the symptoms after a non-traumatic spinal cord injury. Janet Dean, nurse practitioner from Kennedy Krieger shared the importance and role of rehabilitation in rare neuroimmune disorders.
After lunch, Anastacia Wall, PA-C, shared about managing fatigue, Dr. Augusto Miravalle provided some great insights on management of neuropathic pain and Dr. Schofield discussed autonomic loss of function. The participants had a lot of questions and contributed to an active discussion during the panels. The symposium closed with an overview of the research being conducted at the University of Colorado Medical School led by Dr. Timothy Vollmer followed by a question and answer session.
Putting together a symposium of this kind takes a team effort and we are extremely grateful to Dr. Schreiner, Alina Rich, Alexander Stein at University of Colorado, our members and the medical professionals who donated their time to help individuals gain a better understanding of these disorders. One member, Lois Helvie, who attended the symposium captured the importance and spirit of this day nicely:
“I recently attended the Rare Neuroimmune Disorders Symposium, held in Denver last week. I have wanted to attend a symposium for many years, and this year it was in my hometown. I’m so glad it was!
I was diagnosed with Transverse Myelitis in 2000. At the time, it appeared that I had a complete recovery. Now, after 16 years, I am finding that in spite of a “complete” recovery, I am now having issues that I believe have developed because of my TM. This symposium was one of the best things that could have happened for me. I was able to ask questions of practitioners who spend their time studying TM and other rare neuroimmune disorders. Every one of their presentations answered questions I have had for 16 years. While I love my neurologist, he admitted he had only seen 4 cases of TM in his long years of practice, so being with physicians who had the answers, plus meeting others was just an incredible experience for me, and gave me confidence and hope that I can reverse or at least manage the issues I am now experiencing. If you have TM, ADEM, NMO, or any of these rare disorders, please try to attend next year’s symposium in Baltimore. You will be so glad you did!”
