Paul Wehr of Baldwin prepares to run NYC Marathon to raise Huntington’s Disease awareness

Paul Wehr, a 2019 graduate of Baldwin High School, is all too familiar with physical challenges.

Throughout his youth and four years at the high school, Wehr was an all-wrestling athlete while also participating as a member of the Baldwin PAL judo club. He even wrestled as a student-athlete while attending Hunter College and after transferring to SUNY Oswego.

Wehr, 23, is now preparing himself physically — and mentally — for what may be his greatest challenge of all. He is training to take part in the grueling 26.2-mile New York City Marathon on Nov. 3 — even though he has had little to no experience with a race of that distance.

“It’s always just been wrestling,” Wehr said. “I’ve always been interested in doing difficult things and challenging myself, whether going for long runs, signing up for an MMA (mixed martial arts) fight, or boxing match. I like doing difficult things and challenging myself.”

Wehr’s motivation for even considering signing up for the marathon comes from his half-sister, Kayla Rivara, who was diagnosed with Huntington’s disease.

“She’s my half-sister, and her father passed away from it, and there’s a 50-50 chance if a parent has it, that you’ll get it,” he said. “”The other sister (Deidre Symons), didn’t end up having it, Kayla is the one that has it, and a few years ago, the symptoms became very clear that she had H.D.”

Huntington’s disease, a genetic disorder, continues to cast a pall over families, with its assault on both physical and mental capacities and the absence of a cure. The condition leads to the gradual breakdown of nerve cells in the brain. For children born into families with a history of Huntington’s disease, it evens out the likelihood of inheriting the gene that causes it.

Recent estimates show that approximately 41,000 Americans currently have visible symptoms of Huntington’s disease.

“It’s heartbreaking,” Wehr said. “I haven’t met anybody that had H.D. at that point, but I joined the H.D. community here on Long Island. The way it runs in the family, the rareness of it, the fact that there’s no cure, it kind of instills a very unique community and everybody kind of feels what each other’s going through.”

To raise awareness of the disease, Wehr began participating in Team Hope, the signature grassroots fundraising campaign organized by the Huntington’s Disease Society of America, offering support to individuals battling the disease nationwide. Through small walks, Team Hope brings together those who have a connection to Huntington’s, fostering a feeling of community and solidarity. The Long Island event is set to take place at Wantagh Park on Sept. 15.

Wehr participated in his first Team Hope walk in 2021, when Rivara first began displaying symptoms of the disease, but she wasn’t officially diagnosed until the following year.

“The local community, everybody that has H.D. or wants to get involved with H.D. in that area, get together for a little to meet each other or catch up,” he said. “It definitely helped a lot with, you know, getting comfortable with the community.”

Wehr said he’s ready to take on the challenges of a long-distance race.

“I’ve had a lot of wrestling, judo, jiu-jitsu matches in the past, and to me, this is just an event where you run,” he said. “You just keep running until the race is over.

“I’m sure I’ll be nervous the day of or the week of, but it’s just me, really about me getting into shape, and my mindset hopefully will carry me the rest of the way,” he added.

Since signing up for the marathon, Wehr has done some training at Norman J. Levy Park or Hempstead Lake State Park, running for about three to seven miles every other day. He is also contemplating running in a marathon upstate in August to prepare himself for the city marathon.

“I did a half-marathon the other day just to see where I was in terms of timing, and I ran in just under two hours, which is a pretty good pace,” he said.

For the NYC Marathon, Wehr’s goal is to raise $5,000, and as of press time, he has raised more than $1,000 in the months leading up to the race.

“There absolutely needs to be a lot more attention raised,” he said when asked if awareness should be made on the disease.

“A lot of people don’t know about it, and most people I talk to know about it because they went to school for biology or did a project on it. I definitely like to get the word out there, that way more things can be done.”