Efforts Underway to Support and Proclaim NMO Awareness Month in US

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by Mary Chapman |

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Activities are underway this month to raise awareness about neuromyelitis optica spectrum disorder (NMOSD), a rare progressive autoimmune disorder that affects about 15,000 people in the U.S.

Patients, caregivers, and advocates nationwide are flooding social media platforms, garnering state proclamations, participating in educational webinars, and holding fundraisers — all in the name of NMO Awareness Month, observed every March, to heighten knowledge about the disease and the needs of the community.

The event seeks to raise awareness among the general public, as well as policymakers, public authorities, industry representatives, scientists, and health professionals.

The effort is coordinated by the Sumaira Foundation for NMO, an organization dedicated to generating global awareness of NMOSD, fundraising to help find a cure, and creating a supportive community for patients and their caregivers.

“March is NMO Awareness Month and we’re proud to share all of the ways you can get involved and help illuminate the darkness of neuromyelitis optica,” the organization states.

The foundation offers social media downloads such as a Facebook cover photo and suggested post, and an “Awareness Month” post for Instagram.

Leading up to the annual observance, supporters again sought to gather as many proclamations as possible establishing March as NMO Awareness Month. Despite challenges caused by the COVID-19 pandemic, 17 states made such proclamations by March 1.

For its part, the Guthy Jackson Charitable Foundation joined the proclamation effort by providing a template that supporters can use to make requests to their local and state governments.

“Join with your fellow NMO advocates by requesting that your local state or region declare the month of March as NMO Awareness Month every year in perpetuity,” the foundation’s states.

The Sumaira Foundation also offers webinars, including one about “Optic Neuritis in NMOSD,” slated for March 9 at 12 p.m. EST. The presentation will feature Fiona Costello, MD, of the University of Calgary. Another webinar, about “Pregnancy & NMOSD,” will be hosted by Eric Klawiter, MD, of Massachusetts General Hospital, on March 24 at 12 p.m. EST.

On March 20 at noon EST, the foundation’s book club will present a discussion and question-and-answer session with Vanessa Potter, NMOSD patient and author of “Patient H69,” a book about her disease journey.

There’s also Cabaret for a Cause, a dance class taught by professional choreographers and show girls from a renowned cabaret in Paris, France. Sessions are available for standing and seated participants. The March 13 event is $25, with proceeds going to the foundation for NMOSD research.

Supporters are being asked to participate in a two-part hour-long patient nutrition survey to gain insight on the role of diet in disease relapses and patient life quality. Responses will be accepted through May 21 (the tissue collection portion of the general registration form is not applicable to this survey).

To qualify, participants must have an autoimmune disease of the central nervous system, live in North America, and be at least 19 years old. Write to [email protected] for more information.

Community members are also invited to save a date for next spring — March 26, 2022 — for the foundation’s 5th Annual NMOSD Awareness Gala in Boston, Massachusetts.

Elsewhere, the Connor B. Judge Foundation is hosting a virtual patient day on March 11 starting at 8:45 a.m. EST. The educational seminar will discuss the latest in the diagnosis and care of NMOSD as well as the ongoing pandemic and its effect on the community. Registration is required by March 9.