Sam Berns, the Foxborough high school student whose battle with progeria inspired a monumental effort to treat the rare and little-understood "premature aging" disease, has died at age 17.
He was due to serve as an honorary captain at the New England Patriots' playoff game tonight. The team will hold a moment of silence before the game in his honor.
When Berns was diagnosed with progeria as a toddler, doctors told his family he might not live past 13.
Both his parents, Leslie Gordon and Scott Berns, are doctors, and his mother began a research campaign that brought children with progeria to Boston from all over the world. Continue reading below
In 2003, she and her team isolated the gene that causes the condition and they have since identified drug treatment that has helped prolong the lives of children such as Sam.
The Berns family and their work on behalf of progeria patients are the subject of the feature film "Life According to Sam," which was recently shortlisted for a nomination in the Academy Awards' documentary category.
The exposure has brought widespread recognition and a fund-raising windfall to the Progeria Research Foundation, a non-profit based in Peabody, established and directed by Sam's aunt, Audrey Gordon.
Patriots owner Robert Kraft, after being introduced to Sam and attending the HBO premiere of the documentary in New York in October, made a $500,000 matching pledge to the foundation.
Sam, an avid sports fan who played the snare drum in the Foxborough High School marching band, was invited to a Patriots practice that month, where he gave the players an impromptu motivational speech.
"I loved Sam Berns and am richer for having known him," said Kraft in a statement.
The film, he said, "was so beautifully done. It made you laugh. It also made you cry. Today, it's the latter for all who knew Sam or learned of his story through that documentary." James Sullivan can be reached at jamesgsullivan@gmail.com. Follow him on Twitter @sullivanjames.
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