Highlights from NMOSD Awareness Month

Thank you for joining us for NMOSD Awareness Month! Every March, we come together as a community to amplify voices, share stories, and drive change for those affected by NMOSD.  

We focused on connection, education, and community-powered awareness—because no one should navigate a rare diagnosis alone. From a global online meetup to expert interviews and spotlighting community voices, here’s a look at what we accomplished together. Thank you for joining us!

Global Connections

On March 14, we hosted our first online community meetup of the year, welcoming  those with NMOSD, ADEM, AFM, MOGAD, ON, and TM  to connect together. It was a global gathering, with community members joining from three countries to share space, experience, and support. One attendee reflected, “Thanks for listening and providing the opportunity for people to share their experiences with this very complicated condition.” 

These meetups are held during each awareness month as a reminder that we are stronger together. Everyone is welcome to join us in April, May, June, and July as we continue building connections across our community.

Partnering for Professional Education

Through a strategic partnership with NeurologyLive, we’ve collaborated on content to help educate and inform healthcare professionals about rare neuroimmune disorders. This month, we shared three new interviews focused on NMOSD featuring Dr. Tammy Smith of the University of Utah:

• Understanding the Process Behind Treatment Selection in NMOSD
• Managing NMOSD Disease Progression Through Healthy Habits and Holistic Care
• Furthering the Conversation of Treatment Personalization in NMOSD

Spotlighting Community Voices

Each awareness month, we spotlight the voices of those with lived experience. Through blog posts, podcasts, videos, and more, we work to ensure that no one feels alone in their journey.

Community member Jamie shares, “Since getting sick with NMOSD I have become a wheelchair user, had an ileostomy placed, had multiple bouts of optic neuritis and spent vast amounts of time in hospitals. I have tried many immunotherapies and treatments as my relapses are yet to be controlled, but this week I started a new experimental medication to try and slow down this horrible disease. My priorities have massively changed since getting sick, I was studying my PhD in astrophysics but now work when I can as a freelance writer in the rare disease space. I love the young adult support group and have found a wonderful community on social media which has helped me feel less alone and more understood.”