Rare Disease Advocate | Health Equity Champion | Marathoner / Storyteller

Marion is a passionate advocate and dynamic storyteller whose journey through chronic illness has fueled her mission to uplift others living with rare diseases and systemic health inequities. Diagnosed with neuromyelitis optica (NMO, AQP4+) in 2020—a rare neurological autoimmune disease that caused partial paralysis—Marion faced a life-altering health crisis that redefined her purpose. Instead of retreating, she chose resilience, reclaiming her body through movement and becoming a powerful voice for those navigating invisible battles.

Her personal transformation became public inspiration: Marion ran three major marathons in one year—including the New York City Marathon on the anniversary of her diagnosis. Each race became a symbol of hope, visibility, and defiance against a condition that tried to steal her mobility.

As a Sumaira Foundation Ambassador, Marion raises awareness and support for the rare disease community on a global scale. Her voice has been featured on FOX, in a Rush Hospital commercial, and in national platforms such as BlackDoctor.org’s NMO awareness campaign and the We Are Ill series, where she speaks candidly about chronic illness, identity, and the daily work of survival.

In 2025, Marion will speak at a pre-ECTRIMS event in Barcelona, Spain hosted by Alexion. Presenting the week of the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS), she will share her powerful journey living with neuromyelitis optica (NMO), offering an honest look at the challenges of a rare disease diagnosis—and the resilience it takes to move forward. Nearly five years post-diagnosis, she reflects on the highs and lows, the community that lifted her, and the purpose she’s found through advocacy, healing, and hope. She leads with both vulnerability and vision, showing others that their diagnosis does not diminish their worth—or their power.

Marion’s advocacy is deeply rooted in a broader commitment to justice. Whether she’s championing equitable access to care, addressing the social determinants of health, or mentoring others with chronic conditions, she brings compassion, clarity, and urgency to every space she enters. Her work reminds us that health equity isn’t just policy—it’s deeply personal.

She currently resides in Chicago, Illinois, where she serves as Vice President of Workforce Development for a national clean energy company and lives as a full-time patient. Marion continues to use her platform to raise awareness of rare disease and promote a healthy, empowered lifestyle—proving that even in the face of chronic illness, it’s possible to move forward and help others do the same.