Sam Berns dies at 17; subject of film about genetic condition progeria

Sam Berns, a spunky teenager who was proud to call himself a “band geek” and was at the heart of a 2013 documentary about a genetic condition that accelerates aging, has died. He was 17.

Berns, a Massachusetts high school junior and Eagle Scout who was bald, bespectacled and weighed only 50 pounds, died Friday from complications of progeria, the Progeria Research Foundation announced.

An avid fan of Boston sports teams, Berns also was passionate about playing the snare drum and marching in full uniform with Foxborough High School’s marching band.


“The music that we make together is true, it’s genuine, and it supersedes progeria,” he told an audience at a TED Talkabout his condition last October. “I don’t have to worry about that when I’m feeling so good about making music.”

The HBO documentary “Life According to Sam,” by filmmakers Sean Fine and Andrea Nix Fine, is one of 15 shortlisted for this year’s Academy Awards. Five nominees from the list are to be announced Thursday.

Born Oct. 23, 1996, Sam was diagnosed with progeria at 22 months. His parents, physicians Leslie Gordon and Scott Berns, established the Progeria Research Foundation in 1999 to find a cure for the rare condition, which affects only 200 to 250 children around the world at any time. Gordon became the foundation’s medical director and, in 2003, was one of the researchers who helped identify the gene defect that causes progeria.

Children with progeria live an average of 13 years, according to the foundation. As toddlers, they start to lose hair and body fat, their joints stiffen, and they become prone to dislocating their hips and suffering strokes. They die of heart disease caused by atherosclerosis, the “hardening of the arteries” that usually affects aging adults.

Despite his prognosis, Berns was consistently upbeat. He told his TED Talk crowd in Washington, D.C., that he focused on what he could do, rather than what he couldn’t. Surround yourself with “people of quality,” he advised. “And never miss a party if you can help it: My school’s homecoming dance is tomorrow night and I will be there!”

Invited to a New England Patriots football practice recently, he gave players an impromptu motivational speech, according to the Boston Globe. The Patriots, whose owner Robert Kraft pledged $500,000 to the progeria foundation last year, had a moment of silence for Berns before their playoff game Saturday.