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Kevin Long

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Runner Kevin Long with son Timmy before leaving for Run for 3.21 in Washington, D.C. Photo from Kevin Long

A father’s love for his son has inspired him to raise money and awareness for charities dedicated to the developmentally disabled — by running.

Since 2014, Kevin Long has run five marathons that have benefited nonprofits, including Autism Speaks, Inc. and Developmental Disabilities Institute, Inc. Over the years the Setauket resident has raised $120,000 and calls his supporters Timmy’s Team, named after his 16-year-old son who has both Down syndrome and autism.

Kevin Long celebrates in front of Independence Hall in Philadelphia, Pennsylvania. Photo from Kevin Long

Long recently raised $10,223 of that $120,000 by participating in a three-day run March 19-21, which took him and other participants on a journey from the U. S. Capitol Building in Washington, D.C., to the United Nations headquarters in New York City.

The fundraising event, called Run for 3.21, featured a team of athletes who worked together as a relay team to raise money from sponsors for the National Down Syndrome Society, a human rights organization for individuals with Down syndrome. NDSS organized the fundraiser this year in recognition of World Down Syndrome Day March 21. The numbers three and 21 are symbolic because Down syndrome is the result of the triplication of the 21st chromosome.

“The Run for 3.21 team represents an amazing cross-section of advocates, athletes and allies from the entire community,” said Michelle Ray, NDSS director of national inclusive health & sports programs, in a statement. “Today, people with Down syndrome are living longer, healthier, fulfilling lives, and our Run for 3.21 and companion program, Racing for 3.21 on World Down Syndrome Day, aim to celebrate their accomplishments and help foster a world of greater possibilities for all those with Down syndrome.”

Long said he and his running partner Amy Brown ran six legs of the 250-mile relay race for a total of 36 miles. The longest leg was eight miles, when he and Brown ran from the George Washington Bridge to the United Nations building. He said the relay race featured 20 runners, including a young man with Down syndrome, who were divided into pairs.

“So, we had this common shared bond, if you will, of raising a child with special needs. It kind of made it that much cooler.”

— Kevin Long

Two vans accompanied the group along the trek. One van was for participants who were not currently running so they could get something to eat, take bathroom breaks or rest. The other was on hand in case those who were running encountered a medical problem.

While he has participated in other fundraising marathons, Long said the 3.21 relay was the most memorable for him.

“Just the fact that you can say you ran from D. C. to NY is cool enough,” he said. “But almost all of the other runners were like myself — had a child with Down syndrome. So, we had this common shared bond, if you will, of raising a child with special needs. It kind of made it that much cooler.”

Long said the runners shared stories about their experience raising a child with Down syndrome along the way. In the father’s case, Timmy was born with Down syndrome and diagnosed with autism 18 months later, requiring round-the-clock supervision.

While they passed through some areas he likened to running along Route 347, Long said he saw some interesting sites, including Independence Hall in Philadelphia, Pennsylvania. Another special moment for him was racing through Manhattan on the day of a nor‘easter. He said it was snowing when the group arrived in the city and the traffic was a bit lighter than usual. Brown, from South Carolina, had never visited New York before and was almost in tears running in Central Park. Long said it was special for him too, because he’d also never ran in the city before.

Kevin Long and running partner Amy Brown finish the Run for 3.21 in the snow. Photo from Kevin Long

The runner said the group was lucky the storm didn’t hit earlier because the vans may not have been able to navigate the streets in heavy snow.

When the race ended, his wife Anne Marie, Timmy and daughter Abigail were there to greet him. The other runners were also welcomed by their families who were thrilled to see them.

Long’s wife said she supported her husband fully when he decided to take on the event.

“His personal running journey, along with his teammates, brought attention to a wonderful organization that advocates tirelessly for people with Down syndrome,” she said. “I am so proud of the way he puts himself out there to raise awareness and fundraise for Timmy’s Team and others like our son.”

Long said while Timmy has difficulty speaking, he gave his father a big hug after the journey.

“That’s why I do this,” Long said. “The whole reason I keep with the running is because of him.”

For more information on Timmy’s Team and NDSS visit www.classy.org/fundraiser/1228281.