NMOSD Awareness Month underway with events, initiatives
Sumaira Foundation, others aim to spotlight people living with rare condition
Initiatives are underway worldwide to mark NMOSD Awareness Month, with the goal of boosting awareness of neuromyelitis optica spectrum disorder (NMOSD/NMO) and spotlight people who live with the rare neurological disease.
March has been recognized as NMOSD Awareness Month since 2016 in the U.S. and elsewhere. Leading the charge has been The Sumaira Foundation (TSF), which is offering events and resources throughout the month.
This year, the foundation kicked off the campaign on its Facebook page, posting proclamations from the Ohio and Kentucky governors recognizing March as NMOSD Awareness Month.
“Happy #NMO Awareness Month,” the foundation said in a March 3 Facebook post. “Let’s be louder and brighter than ever before and continue to #THRIVEin2025!”
NMOSD is a neuroimmune condition in which the immune system mistakenly launches inflammatory attacks against healthy parts of the nervous system, particularly the optic nerve — which sends and receives signals from the eye — and the spinal cord. The rare disease can be confused with better-recognized conditions like multiple sclerosis.
Social media campaign, webinar aim to raise awareness
TSF is encouraging supporters to promote NMOSD Awareness Month on social media by sharing their photos with an awareness month photo frame and using the using the hashtags #TSFNMO2025 and #THRIVEin2025.
The foundation will host a webinar, “NMOSD in Sub-Saharan Africa,” on March 17. The event, part of TSF’s From the Experts series, will feature a discussion of the frequency of NMOSD in the region, as well as topics including diagnostics, treatments, and clinical trials. Participants will be able to pose questions directly to the speakers.
TSF encourages patients, caregivers, and others to participate. Registration for the live event is free but required. The webinar will be recorded and made available on TSF’s YouTube channel.
Meanwhile, Neuromyelitis News has launched a campaign, Spotlight on NMO: Owning your diagnosis, that will offer a series of articles aimed at helping patients empower themselves after an NMOSD diagnosis.
In the first installment, “Here’s how to explain neuromyelitis optica spectrum disorder,” patient advocate and Neuromyelitis News columnist Jennifer van Amerom describes the challenges patients face when trying to explain how NMOSD affects their lives to people who are unfamiliar with the rare disease and the disability associated with it, which may not be obvious.
“Even if it seems so at first, explaining NMOSD isn’t impossible,” van Amerom writes. “By having a few go-to responses for different situations, you will be able to communicate effectively without feeling overwhelmed.” She offers tips on how to approach the challenge in various settings, such as the workplace or a healthcare facility.
Additional topics that will be covered throughout the month include:
- the role of advocacy in the NMO community
- how to discuss NMO with your employer
- protecting autonomy and communicating support boundaries with NMO
- developing an NMO pain management strategy
- establishing a working relationship with your NMO healthcare provider
- knowing when to seek alternative NMO healthcare support.
As in previous years, others are also getting involved in NMOSD Awareness Month. “No matter how much time you have, you can get involved,” the Siegel Rare Neuroimmune Association (SRNA) says on its event page.
Anyone with a free minute can share NMOSD facts and resources on social media, the association says. For those with an hour to spare on March 14, SRNA will hold a virtual community meetup for patients, care partners, family members, medical professionals, and supporters. And anyone who can commit to a full day is encouraged to host a gathering or event to raise NMOSD awareness.
Other TSF events planned for the month include virtual support group meetings for anyone affected by NMOSD or the related myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD).
The foundation will host a Patient Day for NMOSD and MOGAD at Stanford University on March 29. People with NMOSD or MOGAD, as well as caregivers, healthcare providers, researchers, and advocates in the San Francisco area are invited to join the free event, which is meant to connect members of these communities and provide information and updates. Registration is required.
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