Tuesday, December 31, 2013

Berned By the Boston Globe

"Foxborough youth’s aging disease spurs research, documentary" by James Sullivan |  Globe Correspondent, December 26, 2013

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.

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.

Sort of a reverse Benjamin Button.

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.

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.”

I'm tired of the in$pirational individual $ucce$$ $tories promoted by my propaganda pre$$, sorry.

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.

Where's my half-million, Bob? I'm not wishing the kid ill at all; I'm just wondering why $ome get funded and others do not. 

Related: The Kraft Curse 

We will see what happens in the playoffs.

“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.

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....

Last Saturday, Sam and his parents got on the phone to speak with The Boston Globe....

And thus the front-page feature.


RelatedA message of hope, inspiration for all