Marion Jones, vice president of workforce development in the solar energy industry and ambassador for The Sumaira Foundation, is defined by far more than just her title.
Behind her professional success is a story of strength, resilience, and advocacy following a life-altering diagnosis of neuromyelitis optica (NMO), a rare autoimmune disease.
In November 2020, during the height of the COVID-19 pandemic, Marion’s journey with NMO began with what seemed like a lingering headache. After a misdiagnosis and worsening symptoms—including weakness and partial paralysis—she was finally diagnosed following an MRI. The news was devastating, especially with NMO being so rare and unfamiliar. Yet, Marion’s story didn’t end there—it transformed.
She endured a grueling initial relapse that left her hospitalized, undergoing treatments similar to dialysis, and out of work for nearly a year. But her journey to recovery was marked by small wins that evolved into extraordinary achievements: walking unassisted, driving again, and even running. Remarkably, Marion has since completed four marathons—a testament to her determination to not just survive, but thrive.
Marion is now an active advocate in the rare disease community. As an ambassador for The Sumaira Foundation, she speaks out, connects with others, and fights for policies that support those living with rare conditions. She emphasizes the importance of proper rest, nutrition, stress management, and—most importantly—community.
Her advice for anyone newly diagnosed? Don’t isolate yourself. Seek out others who speak your language. There is power in knowing you’re not alone.
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