Running a Successful Nonprofit for NMOSD & MOGAD- The Sumaira Foundation- The Sumaira Foundation

Meet Sumaira. Diagnosed with sero-negative neuromyelitis optica spectrum disorder (NMOSD) after experiencing sudden and severe vision loss and weakness/numbness. Two months after her diagnosis, Sumaira started her own nonprofit organization called The Sumaira Foundation (TSF) to generate global awareness, create and build communities of support for patients and their caregivers, support research and advocate for the community. After 9 years, TSF is now an international charity raising funds for research. We talked about if we are destined to be great despite our health battles. Was there ever a grieving process for being diagnosed when she started a charity 2 months later while others fall into a deep depression? What are the difficulties of running a charity for a decade? Is being a woman an hindrance or an asset to running a non profit in the chronic ill/disease arena?

0:00 Start
5:37 Did you ever have a grieving process or go go go?
6:08 I’m still grieving 8 years later
7:02 The internet told me I wasn’t going to survive
8:45 When you live what you do, it doesn’t feel like work
16:30 what is harder? Starting a foundation or innovating 8 years later?
17:30 enriched by all the learning of 8 years running a nonprofit
21:00 do you serve the people first or sponsors since money is needed
23:00 Sometimes I forget I am the Sumaira after the foundation
27:31 having 40% vision lost in my right eye
29:00 grateful to appreciate the good days through all the bad health days
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I'm Joe Sooch. I have Fibrodysplasia Ossificans Progressiva(FOP) where my muscles, tendons, and ligaments turn into bone. I get flares/swelling all over my body that can last a month to 2 years and bones will form thus locking my body into place. It is extremely rare with about a thousand cases on the planet. I am basically 95% disabled and permanetely in a wheelchair.