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Foxborough youth’s aging disease spurs research, documentary

Sam’s parents, Scott Berns and Leslie Gordon, are dedicated to finding the cause and a cure for progeria, a rare genetic disease. Below, the Patriots and owner Robert Kraft welcomed the 17-year-old to a practice field at Gillette Stadium.

Sam’s parents, Scott Berns and Leslie Gordon, are dedicated to finding the cause and a cure for progeria, a rare genetic disease.

Sam’s answer was music to the coach’s ears. When asked to name his favorite Patriots player, the high school junior said he did not have one. It takes every member of a team to succeed, he said.

On the practice field at Gillette Stadium, the entire Patriots team strode toward their visitor, led by coach Bill Belichick, who was grinning from ear to ear. It takes a special person to get the Patriots’ legendarily tight-lipped coach to smile like that. Foxborough’s Sam Berns is a very special person.

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Apart from his impressive wisdom, Sam has progeria, the rare genetic disease sometimes described in simple terms as “accelerated aging.” At 17, he has already outlived his doctors’ prognosis by several years.

Sam’s parents, Leslie Gordon and Scott Berns, are both doctors. When their only child was diagnosed with Hutchinson-Gilford Progeria Syndrome in 1998, they dedicated themselves to seeking the cause and a cure for the disease, a misunderstood and largely untreated condition that occurs in an estimated one in 8 million. In 2003, their scientific team identified the gene that causes progeria; more recently, they completed a successful research trial for the cancer drug lonafarnib, which has been shown to have positive effects for progeria patients.

The Patriots and owner Robert Kraft welcomed the 17-year-old to a practice field at Gillette Stadium.

New England Patriots

The Patriots and owner Robert Kraft welcomed the 17-year-old to a practice field at Gillette Stadium.

Now a high-profile film about the family’s medical odyssey has raised awareness and critical funding for the Progeria Research Foundation, run by Gordon’s sister Audrey. “Life According to Sam,” a feature-length documentary that recently premiered on HBO, has just been announced as one of 15 feature films shortlisted for this year’s Academy Awards nomination for best documentary. Oscar shortlisting narrows the field of eligible candidates in certain categories in preliminary voting by academy members. From that list, documentary branch members will select the five nominees, to be announced Jan. 16.

In October, Patriots owner Robert Kraft made an early departure from an NFL meeting in Washington, D.C., to attend HBO’s red carpet premiere of the film in New York, at Sam’s invitation. Kraft had already pledged $1,000 toward the research for each year of Sam’s life, $16,000 at the time. When Sam noted that he would turn 17 in a few weeks — and wondered if Mr. Kraft would see it in his heart to bump up his donation to $17,000 — Kraft laughed.

“I said, ‘Holy mackerel, this kid’s pretty good,’ ” he recalled, calling from a flight earlier this month. “I’ve fallen in love with this young man. Anyone who thinks they can’t overcome their problems should watch this movie.”

As he sat and watched the film at the premiere, Kraft made up his mind to increase his pledge to $100,000. By the time it ended, he had gone even higher. Kraft, visibly moved, stood up and pledged to donate $500,000 if the foundation could raise matching funds by Sam’s birthday later that month. The foundation sailed past the goal, securing nearly $700,000 on top of Kraft’s donation.

“We had two weeks to raise 25 percent of our entire budget,” recalled Gordon, sitting in her office in a small Peabody business center. “I had high school friends of mine running to my house and putting money in my mailbox on the 22d,” the day before Sam’s birthday.

Sam Berns at the HBO premiere in October. At age 17, he has outlived his doctors’ prognosis by several years.

Thos Robinson/Getty Images for HBO

Sam Berns at the HBO premiere in October. At age 17, he has outlived his doctors’ prognosis by several years.

Just as Sam feels about his beloved sports teams, it has taken a wide-ranging team to help Leslie Gordon in her dogged pursuit of a cure for her son’s condition. A 28-member group has been conducting research trials at Children’s Hospital since 2007, treating children with progeria whom they have flown in from around the globe. Celebrities including Garth Brooks and hot rod designer Chip Foose (whose late sister had progeria) have lent their names and fund-raising help. The Bruins have made Sam and his family VIPs over the past several years.

Sam recently delivered a TED Talk at the prestigious TEDxMidAtlantic in Washington, which has gone live on the Internet. He was the only speaker who received a standing ovation, said his aunt Audrey. He flew back after his presentation to attend a high school dance.

“It’s hard to get an appointment with Sam,” said Gordon. “It’s almost comical – we kind of need to book him.”

Last Saturday, Sam and his parents got on the phone to speak with The Boston Globe. He was spending the weekend studying and resting after the Foxborough High School band’s holiday concert (he plays the snare drum). His parents say they are scaling back on his media interviews so he can concentrate on being a 17-year-old trying to get into a good college — maybe Harvard or Brown, he thinks.

He agreed to become the subject of the documentary after watching an earlier film, “War/Dance,” by the codirectors, Sean Fine and Andrea Nix Fine. That film, about students from a Uganda refugee camp preparing for a music competition, earned an Oscar nomination in 2008. The couple’s 40-minute film “Inocente” won the 2013 Academy Award for best documentary short.

Sam was impressed with “War/Dance,” and he and his parents met the Fines for dinner at a local Chili’s. Sam had questions.

“There had been some previous media happenings in my life, but I’d been generally out of the spotlight for a while,” he recalled. “I wanted to know more about what this process was going to be like. I was definitely hesitant at first, but these circumstances were the best I thought we could have to make an amazing film that could reach out to everyone out there and help other kids with progeria.”

In a separate conversation, Andrea Fine said Sam “had us at hello. It was like family dating. We were all sort of sizing each other up, and we all sort of fell in love.”

Over dinner, Sam told the directors, “You can’t make a film that’s going to make people feel bad for me,” she said. He repeated that wish on camera on their first day of shooting. That footage opens the movie.

Though the occurrence of progeria is so rare — according to the foundation, Sam is one of about 100 young people currently diagnosed with the condition — the key to its cure could hold widespread benefits for the entire human population. In the beginning, said Leslie Gordon, “we didn’t really know anything about the biology of the disease. I couldn’t say it was truly related to the aging or heart disease that affects all of us.” Her team’s research, which has unfolded much more rapidly than typical clinical trials, has proven that progeria studies could in fact be applied to the normal aging process.

Now the film has raised awareness of the disease exponentially. Before HBO, “Life According to Sam” premiered this year at Sundance, “which was an amazing accomplishment in itself,” said Sean Fine.

As they had hoped, the film’s success — HBO says a million people have seen it already — has helped open many more doors for Audrey Gordon and her small staff.

“I don’t want to say it’s been overwhelming,” she said. “That would mean we can’t handle it. It’s been exciting.”

A former litigator, she gave up her career to establish the Progeria Research Foundation when her sister and brother-in-law first told her about Sam’s diagnosis. She had previously worked on a daily basis with divorce, personal injury, and other lawsuits.

“Nobody was happy, let’s put it that way,” she said. “Now everyone I deal with just wants to help save kids’ lives. You can’t get better work. Every day I’m energized.”

Amid all the celebrity support and Oscar talk, Sam has remained focused on his schoolwork and the school band. He was, however, pleased to receive a special gift from the people at HBO — a replica throne from one of his favorite shows, “Game of Thrones.”

“What a valiant family,” said one of Sam’s biggest fans, Robert Kraft.

James Sullivan can be reached at jamesgsullivan@gmail.
com
. Follow him on Twitter @sullivanjames.
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