This year’s NMOSD Awareness Month celebrates #NMOmilestones
Patients encouraged to share their own achievements
March 1 kicks off NMOSD Awareness Month, which aims every year to shed light on the experiences of people living with neuromyelitis optica spectrum disorder (NMOSD).
The Sumaira Foundation (TSF) has led the month-long advocacy initiative in the U.S. since 2016, promoting efforts to spread knowledge about the rare neuroimmune disease among the general public, healthcare providers, and lawmakers.
TSF, in honor of its 10th anniversary, this year is encouraging people to share their own #NMOmilestones, accomplishments they’ve been proud to achieve while living with NMOSD or caring for someone with the disease.
Sumaira Ahmed, TSF’s founder and an NMOSD patient, shared her milestone on the event webpage:
“I started dancing when I was 3 years old,” Ahmed wrote. “When I got diagnosed in 2014, I was certain that I would never be able to dance again due to severe vision loss and pain throughout my entire body. But last year, I started dancing again [without pain!] and it’s improved so many other aspects of my life and health.”
How to get involved
Participants can share their own milestones with TSF by sending an email to [email protected]. The foundation asks for a vertical photo that shows the milestone, two to three sentences, and links to participants’ social media channels so they can be tagged.
The foundation is encouraging supporters to promote NMOSD Awareness Month on social media. It offers social media graphics in several languages that can be shared using the hashtags #TSFNMO2024 and #NMOvement.
A “Get Smart” section on TSF’s website features resources for learning about NMOSD. These include expert webinar series, podcasts, NMOSD patient testimonials, U.S.-approved therapy charts, and other informational materials. The website is available in more than 25 languages.
TSF is also hosting a free webinar about family planning for people with NMOSD and other rare neurological diseases on March 1 at 10 a.m. EST. Ahmed Shatila, MD, a neurologist in the United Arab Emirates, will discuss myths and facts about family planning, as well as topics for patients to discuss with doctors when preparing for pregnancy and breastfeeding. Attendees will have the opportunity to ask questions in real time.
The webinar, supported by AstraZeneca — whose subsidiary Alexion, AstraZeneca Rare Disease markets NMOSD therapies — will be conducted in English with Arabic subtitles. A recording will be available later on TSF’s website and YouTube channel. Free registration is available online.
Additional webinars in various languages will be offered throughout the month and can be found on the event webpage. Virtual support groups in languages including English, Spanish, German, French, Italian, Danish, and Turkish are being hosted by TSF ambassadors.
More events planned
The Siegel Rare Neuroimmune Association (SRNA), celebrating its own 30th anniversary this year, is also promoting NMOSD Awareness Month. Its event website features several ways to get involved.
The association is hosting “NMOSD Together,” a special event series March 5-27. Those interested in participating can register on the event platform, after which they will have access to the three sessions being held throughout the month, featuring expert Q&A sessions and community meetups. Participants will also be able to network with others on the platform and access resources and tools.
SRNA notes other ways supporters can get involved, including circulating its social media posts, sharing their NMOSD own stories with the association, setting up a fundraiser, or contacting local legislators to encourage recognition and support of NMOSD Awareness Month.
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