Horizon Therapeutics plc is teaming up with Christine Ha, the first blind contestant on MasterChef and winner of the show’s third season, who has been living with neuromyelitis optica spectrum disorder (NMOSD) for more than 20 years. For NMO Awareness Month in March, Horizon and Ha are collaborating with the Guthy-Jackson Charitable Foundation, Siegel Rare Neuroimmune Association, and The Sumaira Foundation, on an initiative called “NMOSD Won’t Stop Me,” which encourages people living with NMOSD and their care partners to share their stories and advocate for themselves.
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NMOSD is a rare inflammatory disease that most often affects the optic nerves and spinal cord and is commonly misdiagnosed as multiple sclerosis.1 It can lead to sudden vision loss, paralysis or both.2 Ha was diagnosed with NMOSD at 23 years old, four years after experiencing her first NMOSD symptom of optic neuritis. After diagnosis, she continued to experience optic nerve inflammation which caused her to lose almost all of her vision by age 28. Ha’s condition did not stop her from winning the third season of MasterChef, opening two Houston-based restaurants, authoring a cookbook, hosting a cooking show for the visually impaired and much more.
“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. “I’m excited to be part of this initiative and to hear how others living with NMOSD define themselves, outside of the condition. 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.”
Everyone who submits a story will receive Ha’s cookbook, Recipes from My Home Kitchen, and the chance to connect with Ha and others living with NMOSD during a Facebook Live event and virtual cooking class. Individuals who submit stories could also be selected for a special chance to meet Ha.