East End brothers join ALS 100 golf marathon in father’s memory

The final green of a grueling 100-hole fundraiser for ALS is not like any other.

By then, the golfers have taken hundreds of swings since before sunrise. They hit glow-in-the-dark balls in the early morning, rushed from shot to shot and squeezed in a short lunch before heading back out again.

Then everyone gathers for one final par 3, where they tee off until the entire field is done. Once all the irons are placed back in the golf bags, the players walk to the green. They end up together — the green dotted with golf balls — surrounded by volunteers, staff, family members and supporters.

For Cutchogue brothers Dan and Stefan Kuehn, that walk culminates with thoughts about their father, Christopher, who died from amyotrophic lateral sclerosis, or ALS, in 2021.

Often called Lou Gehrig’s disease — after the Yankees legend who died from it — ALS is a progressive neurological disorder that gradually robs people of the ability to move, speak and, eventually, breathe.

“We need to be the voice for Dad, who doesn’t have a voice anymore,” an emotional Stefan Kuehn told The Suffolk Times ahead of the event, during a conference call that included his brother. “That’s what has helped me personally so much.”

While much of the golf world’s focus will be on Shinnecock Hills for the U.S. Open during the week of June 15, the Kuehn brothers — both Mattituck High School graduates — will take part in a very different kind of endurance test to honor their father.

They will return for their third ALS 100 on June 16, joining 32 golfers at Keney Park Golf Course just outside Hartford, Conn., for a one-day marathon that has raised more than $1 million for ALS research and support programs.

“It really wasn’t until we became part of this ALS 100 group that I was able to really talk about it and process it in a healthy way,” Dan Kuehn said of his father’s death. “That’s been really, really great for us.”

Dan, 37, still lives in Cutchogue. During the season he caddies at a private golf course on the South Fork — not Shinnecock Hills, he said — and in the offseason runs the bar at Tucker’s Tap Room in Mattituck. Stefan, 31, now lives in Charleston, S.C., where he works as an insurance agent and coaches high school sailing.

The brothers grew up playing golf at the Cedars Golf Club, a public par-3 course in New Suffolk, but were also immersed in North Fork sailing culture. Their father helped run Old Cove Yacht Club in New Suffolk and helped found a local sailing foundation that supports high school-age sailors.

Their introduction to golf didn’t come from Christopher but from their grandmother, affectionately called Mumi. She spent summers on the North Fork and played Cedars nearly every day, taking the boys with her on weekends.

“There was a summer pass we got for the high school guys and my dad immediately was like, ‘I’ll support this,'” Stefan said. “You’ve got to play and remember your grandmother.”

Even if their father preferred a water sport to one on land, he knew the life lessons they could learn from the discipline needed on the course.

“I think golf is similar to sailing,” Stefan said. “There’s a Corinthian spirit where the pursuit of the goal is more important than the outcome itself. That’s what Dad taught us.”

Christopher Kuehn was diagnosed with ALS in his 60s, and the disease slowly robbed him of the vibrant life he had built around family, sailing and competition.

“From a perfectly healthy, 65-year-old who ran five miles every morning to not being able to walk to the bathroom by himself is pretty tough,” Dan said.

As the disease progressed, Dan and his mother, Aida Reyes-Kuehn, became Christopher’s primary caregivers.

“He couldn’t do much in the kitchen, had to walk around with a walker, had to move to the downstairs bedroom,” Dan recalled. “Every couple of months there was a shakeup with how we had to care for him and what he was able to do.”

Before his death, Christopher made the decision to donate his body to ALS research.

“He was always very scientifically oriented,” Dan said. “For him, it was a no-brainer.”

The ALS 100 was founded by Alex Litt and Cory Sullivan, two friends whose families were deeply affected by the disease. Their inaugural fundraiser in 2023 had just two golfers. The Kuehn brothers joined the following year, when the field expanded to nine. Last year, there were two dozen participants.

Ideally, Stefan said, the first balls are in the air by 5 a.m. One year, Dan said, the golfers played through 90-degree heat. Last year it rained all day.

There is no rain date for the ALS 100.

Each golfer has his own cart, resulting in plenty of time for reflection as they loop around the 6,449-yard public course, built nearly a century ago.

“Every 18 holes, you come back to Dad’s hole again,” Dan said.

“I always think about what he would say,” he added. “He’d be super proud of us.”

Players try to finish each round in about two hours, completing the first 54 holes by late morning before a 30-minute lunch break. Then they head back out.

“There’s no practice swings, really,” Dan said. “You’re just walking up to the ball and hitting it.”

After one 18-hole round ends, players find their next starting hole, meet the rest of their foursome and begin again.

“That lunch break is the hard part,” Stefan said. “You kind of relax for a second and then realize, ‘We still have to go back out and do this.'”

Their second wind comes from believing in the cause. The fundraiser benefits the ALS Therapy Development Institute, Team Gleason and Experience Camps, a nonprofit that serves grieving children and teenagers. It has raised more than $1 million over its first three years, and this year’s event has a $625,000 goal.

As of publication, the campaign had raised $506,570, according to the event’s fundraising page.

Money is raised through donations, sponsorships and golf rounds auctioned at private courses around the country. The auction has included access to some of the country’s top courses, turning hard-to-get tee times into another engine for the fundraiser. The event also includes a Sponsor Invitational on June 15 at the Country Club of New Canaan in Connecticut.

Asked what keeps him going on a day when he will swing the club more than 400 times, Dan pointed back to his father.

“At the end of the day, this is nowhere near as tough as the people who went through this disease,” Dan said. “That’s what pushes us to keep doing it.”