The Siegel Rare Neuroimmune Association was invited to attend the Scarlet and Gray Multiple Sclerosis (MS) Patient Education Day in Columbus, Ohio on December 2, 2017. This event was hosted by The Ohio State University Wexner Medical Center, and provided an opportunity for patients to learn about management of symptoms and the latest research from the experts at Ohio State.
SRNA had a table at the event, and provided information and resources to attendees. While SRNA’s advocacy mainly focuses on ADEM, AFM, NMOSD, ON, and TM, we also have an abundance of resources for those diagnosed with MS since the disorders are closely related. MS is a chronic inflammatory demyelinating disease of the central nervous system, and sometimes people with MS are mistakenly diagnosed with TM. By partnering with The Ohio State University to spread awareness and advocate for these diseases, SRNA is pursuing our mission to support and advocate for individuals and their families diagnosed with rare neuroimmune disorders of the central nervous system; to promote awareness and to empower individuals with rare neuroimmune diagnoses, families, clinicians, and scientists through education programs and publications; and to advance the scientific understanding of and therapy development for these rare disorders by supporting the training of clinician-scientists dedicated to these rare diseases and by supporting basic clinical research.
One of our goals in attending education events such as the Scarlet and Gray MS Education Day is to strengthen our relationship with medical centers and medical professionals. Through these efforts, we hope to further collaborate with The Ohio State University to develop educational programs, advocacy events, and research related to rare neuroimmune disorders. Dr. Jaime Imitola, a neuroimmunologist at The Ohio State University Wexner Medical Center, treats patients with rare neuroimmune disorders regularly. He attended SRNA’s 2017 RNDS and gave a talk on Hope vs. Hype: Are we ready for stem cells in neuroimmune disorders? He will also be a guest speaker on our upcoming podcast, Stem cells as treatment for rare neuroimmune disorders on January 23, 2018.
SRNA is excited to be able to connect with patients and medical professionals of The Ohio State University Wexner Medical Center, and we hope to connect with other medical centers across the United States. We encourage those diagnosed with rare neuroimmune disorders to provide SRNA’s information to their physicians, which will help spread information and awareness throughout the medical community. If you are aware of a medical center that may be interested in starting a collaboration with SRNA, we would love to hear from you! You can email [email protected] to share your ideas.