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Woman Runs NYC Marathon For Son, Others Affected By Neurofibromatosis

Diane Owens never used to like running. In fact, she was vocal about it. 

Diane Owens

Diane Owens

Photo Credit: Diane Owens

But that all changed after her son was diagnosed with a rare condition. 

Nine years and many marathons, half-marathons, and 5K races later, she hasn't stopped pushing forward.

Owens is originally from Bethpage on Long Island, before later moving to Connecticut as a child. She now lives in Southbury, in New Haven County.

For the 2021 New York City Marathon on Sunday, Nov. 7, Owens said she spent less time preparing than she normally would, and chose instead to enjoy the views and take videos to honor loved ones and those diagnosed with neurofibromatosis, including her son, Alex.

At four months old, Alex was diagnosed with a rare condition that causes tumors to grow on different parts of the body, including the brain, back, arms, and stomach.

Owens said she immediately wanted to find out what could be done to treat NF, but she was told the main thing she could do was watch and wait.

“I’m a particularly impatient woman," Owens said. "To me, doing nothing was not an option."

She said she was referred to a nonprofit organization, the Children’s Tumor Foundation, which she said not only donates to fund research for NF but also focuses on advocacy and collaboration with the NF community to find out how to best support their needs. 

“I started fundraising for them through running," she said. "Which is kind of ironic, because I was never an athlete, or runner or anything remotely related to athleticism."

Owens had previously shared with people how much she disliked running. 

She laughed as she recalled thinking at the time: “I know people would pay to see me run.”

Nine years later, she estimates she has raised about $135,000 from running for NF, and a total of about $500,000 through both running and fundraisers she and her husband have organized for the cause. 

In 2016, three years into running to raise money for the foundation, Owens was diagnosed with a severe case of a rare condition, Guillain-Barré, which left her paralyzed.

“I couldn’t move anything,” she said. “I couldn’t blink. I couldn’t swallow. I struggled to breathe. I struggled to speak.”

The disease also caused intense pain, with Owens noting that having two children with no drugs for pain was “a walk in the park” compared to the pain she experienced.

After weeks spent in the ICU, she began working with a physical therapist toward recovery. 

Before she was able to stand again, she said she asked her physical therapist if she would be able to run the California International Marathon in December. 

Later that year, she went on to run a 5K in Southbury, a relay race on a team of 12 and the Southbury Turkey Trot 5K.

Then, nine months to the day that she was released from the hospital, she ran the California International Marathon.

"It was the fastest marathon I had ever run," she said. "Before or since."

Her older son, Justy, has also joined her in taking part in running and other athletics to raise money for NF, beginning at just 4 years old, by participating in a fun run.

Owens added that she and her family are blessed to have great friends and family to support them along the way and the Children's Tumor Foundation to champion those with NF.

"We're at a place and time where we have no place to go but up," she said. "So, yeah our path is different in life. But I don't lose sleep over it, because we have things to do."

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