Sumaira Ahmed is executive director of The Sumaira Foundation, which advocates for patients with NMOSD and MOG. (Photo courtesy of TSF)

It’s a rare disease that few healthy people have ever heard of. But Sumaira Ahmed, who was diagnosed with neuromyelitis optica spectrum disorder (NMOSD) in 2014, aims to change that.

Ahmed, executive director of the eponymous Sumaira Foundation, wants to raise worldwide awareness about her illness, which affects only 1-2 per 100,000 people but disproportionally strikes women and people of color.

Born and raised in New Jersey but of Bangladeshi origin, she launched the nonprofit group from her hospital bed at Boston’s Massachusetts General Hospital only 2 months after her diagnosis.

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“I was 24 years old when I experienced my first episode: very sudden, severe vision loss in my right eye,” she told Rare Disease Advisor. “At the local emergency room, we did some imaging. That’s when they determined that inflammation in the optic nerves in my brain was causing the vision loss.”

Ahmed received steroids intravenously for 3 days and was then discharged after being informed she had an idiopathic case of optic neuritis. Doctors also told Ahmed that her vision would likely return within 3 months to a year and that she had a 16% chance of developing multiple sclerosis (MS).

A month later, right after celebrating her 25th birthday, Ahmed had her second episode, which was far worse than the first. Her vision went from 20/20 in both eyes to 20/600 in her right eye, and 20/120 in her left eye. After a battery of tests including imaging and a lumbar puncture, doctors determined she had NMOSD.

“But I was also experiencing severe nausea and pain in the back of my neck. What scared me the most was this burning and tingling sensation in my hands and my feet. That’s when I realized this was more than what we thought it was,” Ahmed said, recalling the moment doctors told her she had NMOSD. “The sound of it shocked and frightened me.”

$500K Raised for NMOSD, MOGAD Research

Common symptoms of NMOSD include vision loss, paralysis, paraparesis, weakness, numbness, and spasticity. Roughly 95% of people with the disease are initially diagnosed with MS, though Ahmed was not among them.

She attributes that to having been a patient at Mass General, home to several of the nation’s NMOSD specialists including Michael Levy, MD, PhD, director of the hospital’s Neuroimmunology and Neuro-Infectious Diseases Division. Dr. Levy also chairs the foundation’s medical advisory board.

“That’s what saved me and helped in my early detection,” she said. “Unfortunately, that is not the case for most patients around the world and here in the United States.”

Ahmed added: “In my 8 years of advocacy work in this space, probably every other day, I come across a story about someone being misdiagnosed with MS, and how those therapies actually made the disease far worse. It’s very sad. This reinforces why the work we’re doing is so important, so that we can prevent any more misdiagnosis from happening.”

The Sumaira Foundation, which Ahmed established 8 years ago, has since funded $500,000 in research grants to study not only NMOSD but also myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD).

Earlier this year, PBS-TV featured her foundation in an episode of Medical Stories—an Emmy award-winning series that uses powerful storytelling to connect viewers with untold patient stories of hope, encouragement, and empowerment.

The episode, which will be broadcast until the end of 2022, marked the first time that Ahmed had ever told her story publicly to such a wide audience.

“It happened in a very roundabout way through one person. That person told the other person. Then it finally came to me. When it did, it was a no‑brainer,” she recalled. “I said to myself and our team that we’re going to do this because visibility and raising awareness is important. PBS is an incredible platform that reaches millions of households around the United States.”

‘Just the Beginning’

NMOSD is roughly 3-4 times more likely to affect people of African or South Asian ethnicity than the general population. Likewise, women are 9 times more likely to develop NMOSD than men, compared to MS, where the ratio is 3:1.

“Unfortunately, it feels like the worst things always happen to women,” Ahmed said. “For the most part, we’re fighters. These are the cards that we’re dealt.”

The Sumaira Foundation recently launched a global website, with content in 10 languages. It has also expanded to Canada and Europe, with plans for further growth internationally.

Ahmed herself has been on an off-label therapy since her last relapse in November 2018. At that time, nothing was on the market to treat NMOSD, but since then, the US Food and Drug Administration (FDA) has approved 3 therapies for the disease.

The first therapy, eculizumab (Soliris®)—which won FDA approval in 2020—blocks a part of the immune system called the complement system. A newer version of eculizumab, known as ravulizumab-cwvz (Ultomiris™) requires infusions every 8 weeks rather than every 2 weeks.

The second drug, also approved in 2020, is inebilizumab (Uplizna®), a CD19 monoclonal antibody that depletes B cells as does rituximab, but across a broader set of B cells. The third, approved in 2021 for aquaporin-4-positive patients, is satralizumab-mwge (Enspryng™), an interleukin‑6 blocker.

“As nice as it is to be in remission, that doesn’t necessarily mean you’re without issues,” Ahmed said. “I’m looking forward to actually switching to one of these on‑label therapies. They were designed for patients like me, with this disease in mind, with these symptoms.”

Ahmed added: “These therapies obviously are life-changing. More so, they’re symbolic of our future with this disease. We already have 3, with more in the pipeline. I’m hopeful that this is just the beginning.”