158. Getting a Rare Disease (NMOSD)and Changing the World with Sumaira Ahmed

This week I sat down with Sumaira Ahmed. Sumaira Ahmed is the founder and executive director of The Sumaira Foundation (TSF). Prior to her career in healthcare and hospital administration in Boston, Sumaira worked as an actor/model in Hindi-/Bengali-language media, primarily in southeast Asia. Sumaira is a classically-trained Kathak dancer and has performed around the world in venues including Madison Square Garden, the Dolby Theatre, Santiniketan, and the Rudolf Steiner Theatre. In the summer of 2014, Sumaira was diagnosed with sero-negative neuromyelitis optica spectrum disorder (NMOSD) after experiencing sudden and severe vision loss and weakness/numbness. Less than two months after her diagnosis, she founded TSF to raise global awareness of NMOSD and MOGAD, create communities of support, advocate on behalf of patients and their caregivers, and support clinical research. In 2015, Sumaira was crowned the Miss Bangladesh-USA advocating for equal opportunity education for Bangladeshi children in efforts to increase tolerance and strengthen the country’s international presence, economy and infrastructure. In September 2021, Sumaira was honored with WEGO Health’s “Best Kept Secret” Award recognizing her advocacy work in rare disease. In 2022, Sumaira was prominently featured in an Emmy-award winning series, "Medical Stories", in an episode about NMOSD. Join me in my conversation with her where she tells her story and how she continues to triumph among adversity. You can find out more about Sumaira and her foundation at www.sumairafoundation.org @thesumairafoundation (instagram) @thesumairafoundation (facebook) @thesumairafdn (twitter)