After frightening diagnosis, Weston woman organizes 5K for a cure

In 2022, Terry Clark was a healthy 58-year-old woman who exercised six days a week. After a bout of COVID-19, though, she began to suffer from a baffling range of health issues including migraines and tendinitis.

In March of that year, shortness of breath sent her to urgent care and tests revealed an irregular heartbeat. After months of tests and visits with specialists, she received a diagnosis of neuromyelitis optica spectrum disorder, or NMO, an autoimmune disease.

“I went into the hospital not being able to keep food down. I couldn’t walk without a walker,” Clark said.

NMO, also known as Devic’s disease, causes inflammation in the central nervous system, according to the Sumaira Foundation, a Brookline-based organization raising awareness about autoimmune diseases and creating communities for patients and caregivers.

The disease can cause visual impairment through inflammation of the optic nerve; impaired mobility through inflammation of the spinal cord; or severe nausea, vomiting and hiccups caused by inflammation of an area of the brainstem.

Sandy Honeyman, a longtime friend and neighbor of Clark, said NMO caused Clark to go through a stark change.

“I saw her transform from a vibrant, healthy woman to a shadow of herself as she declined, even having to walk with a walker,” Honeyman said. “Through excellent medical care, incredible personal fortitude and the support of her amazing family, Terry worked her way back to health over a period of years.”

Although Clark had difficulty walking after her diagnosis, a regimen of infusions and more than a year and a half of physical therapy have left her with a positive long-term prognosis and minimal NMO symptoms. There are, however, relapses bringing the debilitating symptoms back.

“It’s a deteriorating disease,” Clark said. “It’s progressive if it doesn’t get diagnosed, but the key is early diagnosis. I was fortunate to be in the presence of such a smart doctor.”

Inaugural 5K to raise research funds

On Sept. 28, walkers and runners will take to the streets of Weston for a charity 5K raising awareness and money for the Sumaira Foundation. Clark, a Weston resident of more than three decades, is an organizer.

“We’ve got to advocate for ourselves,” she said. “As I used to be a runner, having a walk/run thing is a good way to get people active and get the word out there. It’s through one-by-one word of mouth that people become proactive.”

The race starts at 9 a.m. at Town Hall, 11 Town House Road. Registration is $30 and folks can register right up to the day of the race.

Runners will head down Boston Post Road, turn right onto Concord Road, bearing right on Merriam Street before turning onto Sunset Road. Participants will take Sunset Road to Conant Road and will finish back at Town Hall.

The main goal of the inaugural 5K, Clark said, is to create awareness about NMO and other diseases like it. Being proactive is the most important thing someone can do to diagnose and manage NMO.

“This is the first year and hopefully we’re going to do it annually,” Clark said. “The goal is to spread the word, make people aware and advocate for themselves.”

Honeyman added seeing her friend persevere against the disease is inspiring, and it makes supporting her through the 5K a simple decision.

“It is so gratifying to see her enjoy her life again, take walks around the neighborhood and be back at work. Her strength and perseverance throughout this unexpected life change has been extraordinary,” Honeyman said. “Walking to support her and others with these health challenges is an easy choice.”

For more information about The Sumaira Foundation, visit sumairafoundation.org. To register for the race, visit bit.ly/4mb8Okx.