Naylor & Breen golf tourney raises awareness of rare disease with local significance

By STEVEN JUPITER

BRANDON—Almost everyone in the Brandon area has been touched in one way or another by Naylor & Breen, the construction company founded by Rob Naylor and Peter Breen in 1978. Over the years, the two men have provided employment for hundreds of tradespeople in the area, supervised the construction of many homes and buildings, and donated significant amounts of time, energy, and money to local causes. The company’s impact is felt all over the region.

But now the generosity is being reciprocated. Rob Naylor has Progressive Supranuclear Palsy (PSP), an extremely rare neurodegenerative disease for which there is no treatment and no cure. On Friday, August 23, 124 golfers descended upon the Neshobe Golf Club in Brandon to raise money and awareness for PSP at the Naylor & Breen Open golf tournament.

The annual event, now in its 8^th year, has always raised money for charity. The Visiting Nurse Association and Hospice of the Southwest Region has been a favorite recipient, for example, because the organization was so helpful in caring for Rob Naylor’s father. But this year, the designated charity is hitting even closer to home.

PSP is a bit of a medical mystery. Its causes are still unclear—it is suspected that accumulations of certain proteins in the brain may play a role—and it often goes undiagnosed because many of its symptoms mimic those of more common conditions, such as Parkinson’s. As PSP progresses, those afflicted lose the ability to direct their own muscles.

“The first thing we noticed was Rob was having trouble with his handwriting,” said Chris Naylor, Rob’s wife, at the Naylors’ home on Lake Dunmore. “Then he started having difficulty walking. He’d pause and not be able to get started again. We’d shine a laser pointer on the ground to give him something to focus on to get him moving. Then his speech got softer.”

Chris now does all the talking for the two of them. Rob’s mind is still sharp, but he’s no longer able to speak. 

A golf game with his doctor in 2019 forced the issue: the doctor could see something was clearly wrong in the way Rob maneuvered around the course. Appointments with specialists followed, as did an incorrect diagnosis of Parkinson’s Disease. After two years on Parkinson’s medication, with no apparent benefit whatsoever, the Naylors began to sense that Parkinson’s might not be the culprit after all.

At Mass General in Boston, during the pandemic, they finally received the correct diagnosis: Rob had PSP.

“The doctor said to us, ‘I wish I had better news.’ We came home in absolute silence,” said Chris. “I didn’t want to do any research. I didn’t want to know. It was disbelief and anger.”

With no treatments and no cure for the disease, all families can do is try to make life comfortable for the affected. Rob now uses a wheelchair and a tube to assist with eating. The Naylors installed an elevator at their home. They’re still traveling—they went to Alaska last year and their son, Rick, took Rob to a bachelor party in Nashville—but they know the window for that kind of activity is diminishing.

The Naylors’ daughter, Lexi, now 35, reacted a bit differently to the diagnosis than Chris; she chose to learn all she could about PSP. 

Her research led her to an organization called CurePSP, a New York-based nonprofit whose mission is to raise both awareness and money. They became the intended beneficiary of this year’s Naylor & Breen golf tournament.

Lexi is going a step further: she’s running the New York City Marathon on Sunday, November 3, as one of 5 runners chosen to represent CurePSP in the race. She’s already raised over $15K from sponsors.

“I’m doing it to honor my Dad,” she said. “I don’t think the money will help him, but it will support research and care.”

It’s not her first marathon—she ran one 5 years ago and thought she’d never do it again—but the cause was just too compelling. 

And she won’t be alone. Neil MacKenzie, whose father, Chet, was diagnosed with PSP almost at the same time as Rob Naylor, will also be running the NYC Marathon for CurePSP. What makes this all the more remarkable is that Chet and his wife, Donna, live in Pittsford and he and Rob coached their sons together in Little League. Given the extreme rarity of the disease, the odds of two people in the same community being diagnosed with PSP at the same time are extraordinarily low.

“My father was initially diagnosed with Parkinson’s,” said Neil in a phone conversation. “We’d never even heard of PSP. Three years ago, he was hiking, hunting, and fishing. Now he’s in a wheelchair.”

“I didn’t know Lexi was going to run in the marathon,” he continued. “It was just a coincidence that we both applied to run for CurePSP. I’m doing it to raise awareness about the condition. CurePSP is a great organization. It goes above and beyond for people with PSP and their families.” Neil has raised over $10K so far.

Anyone who’d like to sponsor Lexi can go to https://give.curepsp.org/fundraiser/5421452.

Anyone who’d like to sponsor Neil can go to https://give.curepsp.org/fundraiser/5558385.

And if the turnout at the tournament on Friday is any indication, the community is eager to support the Naylors and MacKenzies as well.

“We had 75 hole sponsors and 11 major sponsors,” said Naylor & Breen co-owner Tanner Romano at the tournament. “That kind of support is absolutely because of Rob. He’s always done for others, for the community, for his employees. To have such a great response for him is everything.”

The major sponsors, who donated thousands, were JP Carrara, G Stone, Abatiello Design Center, Brownell Windows & Doors/Marvin Design, RK Miles Lumber & Hardware, Pratico’s Landscaping & Fence, New England Air Systems, McGee Chevrolets, Paquette, Inc, LaValley Building Supply, and, of course, Naylor & Breen. A veritable who’s who of the Vermont construction industry.

And most of the 31 teams were made up of folks in the business who’ve known each other for years. Before the tournament began, they greeted each other with back slaps and hugs.

Bill Jakubowski of Tedesco Masonry in Rutland said it was his fifth time playing this tournament. “I’ve played a lot with Rob over the years.”

Naylor & Breen Human Resource Manager Amanda Locke said, “Rob is the heart and soul of the company. We want to support him in any way we can.”

In an email on Monday, Mr. Romano said that the event likely will net $42K for CurePSP. 

And though the tournament is more about charity and camaraderie than competition, it seemed fitting that the winner was the team headed by Pete Breen, Rob’s longtime friend and business partner, who retired in 2008.

“They always choose different causes,” said Breen. “This one was good to do.”