Looking Back on NMOSD Awareness Month!

In March, SRNA brought back NMOSD Awareness Month to raise awareness and support for those affected by Neuromyelitis Optica Spectrum Disorder (NMOSD). NMOSD is a rare neuroimmune disorder that affects the central nervous system, specifically the optic nerves and spinal cord. Throughout the year, we raise awareness to improve diagnosis, treatment options, and quality of life for all those affected by rare neuroimmune disorders.

We kicked off NMOSD Awareness month with an online international two-day event called NMOSD Together. The event brought together individuals, families, and advocates affected by NMOSD for two days of education, support, and community. Participants revisited education sessions from the 2022 Pre-RNDS with Dr. Benjamin Greenberg and Dr. Michael Levy about how the nervous and immune systems relate to rare neuroimmune disorders. Live sessions included: a presentation by Crystal Brown from Alexion AstraZeneca Rare Disease on “Prioritizing You” with a focus on mental health for people diagnosed and their care partners, a podcast preview of a Community Spotlight edition of ABCs of NMOSD podcast with community member Melanie Flood, and a special Ask the Experts: Live session with Dr. Grace Gombolay, MD, from Emory University SOM and Children’s Healthcare of Atlanta, and former SRNA fellow Dr. Elena Grebenciucova, MD, from Northwestern University, Feinberg School of Medicine. Attendees also learned how to manage visual issues, and received an overview of NMOSD, pediatric experiences, tolerization, and how to build a healthcare team.

Other SRNA activities in March included online support group meetings for those diagnosed with ADEM, AFM, MOGAD, NMOSD, ON, or TM . Additionally, we held support groups specifically for parents and caregivers of individuals with these disorders, people living in the United Kingdom in partnership with The TM Society, and a group for those living in Europe. There was also an online social hour for young adults with these disorders, creating an informal online space for community and discussions around the unique challenges of living with these rare disorders during the transitions of young adulthood.

The SRNA community shared several powerful stories during the month, including two This is Me stories from Shekita and Gertrud. Shekita shared her hope that her story could help others going through the same thing, believing that collectively, we will find a cure for NMOSD. Gertrud described her journey to get a definite diagnosis and that many people must endure multiple misdiagnoses before receiving the appropriate therapy. Other community members also shared their experiences with NMOSD. Iliana described the difficulty of living with a rare illness, but highlighted the importance of raising awareness about NMOSD. Alexandra reflected on the challenge of accepting her physical limitations, finding encouragement in her ability to make reliable decisions and with support from her doctor. Deshon shared his journey of overcoming feelings of defeat and helplessness after his diagnosis, and how he now wants to help spread awareness and give hope to others going through similar experiences. These stories highlight the unique experiences and challenges of living with NMOSD and the resilience and determination of those affected by it. 

SRNA partners and supporters also participated in NMOSD awareness month. The Guthy-Jackson Charitable Foundation and The Sumaira Foundation raised awareness by organizing several events for the community. The Guthy-Jackson Charitable Foundation hosted a discussion with Dr. Michael Yeaman on Tolerization, held an NMOSD family gathering and multiple community support groups. They also launched their newest Artistry iNMOtion series for teens with six virtual monthly arts and mindfulness groups. To help raise awareness for NMOSD, the Sumaira Foundation illuminated several locations, including the Zakim & Longfellow bridges in Boston and the Empire State Building in New York. They also shared a podcast featuring Leslie Horton, a professional service dog trainer, to talk about service dogs, legal protections, training, and common misconceptions, and hosted several support groups for the NMOSD community.

Alexion AstraZeneca Rare Disease, Horizon Therapeutics, and Genentech also raised awareness for NMOSD this month through educational materials and events. Genentech shared a Q&A conversation featuring NMOSD advocates sharing their experiences and highlighting the importance of community. Horizon Therapeutics collaborated with SRNA, The Guthy-Jackson Charitable Foundation, and The Sumaira Foundation to share inspiring stories of people living with NMOSD through the NMOSD Won’t Stop Me campaign. This campaign highlights community member experiences, including SRNA members and volunteers Ireland Thomas and Doug Kirby. Horizon also launched a website for those living in Europe: NMOSD In Focus.  Alexion Pharmaceuticals is hosting a Say NO to NMOSD event in person and online on March 30, where individuals with NMOSD, medical experts, and advocacy organizations share how they’re Saying NO to NMOSD every day.

As NMOSD Awareness Month draws to a close, we celebrate the success of the collective efforts made by the rare neuroimmune disorders community to raise awareness build support for individuals and families affected by the disorder. We hope you will join as we continue raising awareness for NMOSD and all rare neuroimmune disorders throughout the year. We encourage everyone to join us in this effort and help create a more informed and supportive community for all those impacted by rare neuroimmune disorders. Together, we are stronger.