When 25-year-old Sumaira Ahmed was diagnosed with neuromyelitis optica (NMO), a rare autoimmune disease which affects the spinal cord and optic nerves, there were few people she could turn to for answers.
Her doctors at Mass General and Mass Eye and Ear Infirmary, where she was treated during the summer of 2014 and whom she fondly refers to as “The Dream Team,” could only explain so much; the NIH reports that NMO, a debilitating condition which can cause blindness and paralysis, is diagnosed in just one to two people per 100,000 worldwide.
“I was a perfectly healthy person and I got sick out of nowhere,” Ahmed says. “My family and friends have been there for me, but I almost wish I could talk to someone who also experienced a similar situation to see how they dealt with it. There really isn’t much out there.”
That’s why Ahmed is now taking steps to establish The Sumaira Foundation, a nonprofit that would increase global awareness of the disease, fundraise for research, and, perhaps most importantly, provide much-needed support resources to patients and their families.
In planning for her organization, Ahmed says she’s been amazed by the success of the ALS Ice Bucket Challenge, a viral fundraising initiative for Lou Gehrig’s Disease which has coincided with her illness. “This guy [Peter Frates] created so much awareness on something that people didn’t really know much about and raised so much money,” she says. “I want to be that person for this autoimmune disease.”
At this point, The Sumaira Foundation is still in its infancy. Ahmed hopes that as the organization grows she’ll be able to partner with physicians who are studying the disease.
“This entire experience changed my life. I want to advocate and spread awareness on not just my disease but rare diseases in general because they just don’t get enough attention,” Ahmed says. “I’m really motivated to just get the word out there [and] turn my awful experience into something really positive.”
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