Patients Encouraged to Share Their Stories for NMO Awareness Month
This March, people with neuromyelitis optica spectrum disorder (NMOSD) are celebrating NMO Awareness Month by sharing stories of how the progressive autoimmune disorder has not stopped them from living meaningful lives.
The initiative calls attention to NMOSD, a condition that affects approximately 15,000 people in the U.S. and 10,000 in Europe, and hopes to improve knowledge about the disease and the needs of the community.
Celebrated since 2016 in the U.S., the effort is coordinated by The Sumaira Foundation (TSF), which seeks to improve the lives of patients and ultimately find a cure for NMOSD, a condition that attacks the central nervous system and can lead to blindness and paralysis.
Each year, the foundation joins forces with patients, caregivers, and advocates to garner state proclamations declaring March as NMO Awareness Month. Nevada, Minnesota, Tennessee, and Alabama are among the U.S. states that issued such proclamations in 2022, but the foundation is requesting that the Senate or House make this a national and permanent awareness month for NMOSD.
This year, Christine Ha, the winner of the third season of MasterChef and the T.V. show’s first blind contestant, is partnering with Horizon Therapeutics, the Guthy-Jackson Charitable Foundation, the Siegel Rare Neuroimmune Association, and TSF on an initiative called “NMOSD Won’t Stop Me.”
Ha has lived with NMOSD for more than 20 years. Despite losing her vision from optic neuritis (inflammation of the optic nerves that connect the eyes to the brain), she won the cooking contest, opened two restaurants in Houston, Texas, launched a cookbook, and hosted a cooking show for visually impaired people.
“NMOSD is a part of me, but it’s not all of me — I’m also a chef, a writer, an entrepreneur, Vietnamese-American and many other things,” said Ha in a press release.
The “NMOSD Won’t Stop Me” initiative encourages U.S. residents from the NMOSD community to share their stories and reveal how the neurodegenerative disease has not stopped them from living full lives.
Entries from patients and caregivers will be accepted, and they may be in the form of a written essay, video, or audio message. Participants can share the things they have continued to do despite their diagnosis (or their loved one’s), highlight those who have supported them in their journey, and give some advice to people recently diagnosed with the condition.
Submitters will receive Ha’s cookbook, “Recipes from My Home Kitchen,” and have the opportunity to connect with her and others living with NMOSD during a Facebook Live event and virtual cooking class.
The initiative’s website also features additional resources, including a tip sheet from Ha on living with NMOSD.
“I’m excited to be part of this initiative and to hear how others living with NMOSD define themselves, outside of the condition,” Ha said. “For anyone who is part of a rare disease community, it’s a shared diagnosis that brings us together, but I think it’s through our individual triumphs and journeys that we can really learn from one another.”
The Guthy-Jackson Charitable Foundation is also celebrating the 2022 International NMO Patient Day, March 13, by sharing the latest updates on NMOSD research in a free, half-day Zoom event.
TSF will host its 5th NMO Awareness Gala on March 26, a Hollywood-themed event that seeks to raise $250,000 for research into NMOSD and related disorders. Tickets are available until March 4, and there is no admission charge for patients with NMOSD or for those with a related disorder known as myelin oligodendrocyte glycoprotein antibody-associated disease.
In line with its intention to establish March as the NMO Awareness Month globally, TSF launched its first awareness campaign in Europe. Called “Imagine My Life With NMO,” the campaign encourages patients and caregivers in Europe to share their creative work and stories.
Any artistic submission is welcomed, including drawings, poems, and social media posts. Selected submissions will be featured in a digital gallery on the foundation’s website to raise awareness about the disease and about the resilience of the people who live with it. Questions about submissions can be emailed to [email protected].