SAM BERNS, 1996-2014

14 01 2014

Sam Berns, the precocious New England teen who became the face of an incredibly rare, oft misunderstood genetic condition passed away on Friday.

Drs. Scott and Leslie Berns with their son, Sam

Drs. Scott Berns and Leslie Gordon with their son, Sam

Berns, 17, was the focus of an HBO documentary, Life According to Sam (made by Sean Fine and Andrea Nix), that aired in the fall. The film chronicled the young man’s struggle with his debilitating condition, Progeria, and his dedicated parents’ fight to research the rare disease and prolong the lives of all affected.
Doctors Scott Berns and Leslie Gordon, along with Sam’s aunt, attorney Audrey Gordon, formed the Progeria Research Foundation in 1999. In the mere 15 years since, they have not only identified and isolated the gene mutation that causes progeria, but also run successful clinical trials with a drug called lonafarnib. While there is no cure, as of yet, the trials with lonafarnib are encouraging for the treatment of progeria’s hallmark symptoms; hair loss, scleroderma, deterioration of the kidneys and eye sight, and prolonged cardiovascular issues. Berns had a winning personality, seemingly endless ambition, and a zest for life that should be admired by all. Though he would inevitably to go before his time, as those who suffer from Progeria die before adulthood, Sam Berns was invested in his education, optimistic about the future, and possessed an adventurous spirit that lead him to many rich experiences and to touch many lives.

Of his participation in the HBO film, an official selection at the 2013 Sundance Festival, Sam Berns said:
“I didn’t put myself in front of you to have you feel bad for me. I put myself in front of you to let you know you don’t need to feel bad for me. I want you to know me. This is my life, and progeria is part of it.”

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