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Sam Berns, a remarkable young man from Foxborough, Massachusetts, died last week from complications associated with progeria, a rare disease characterized by accelerated aging.
Sam was a junior at Foxborough High School, where he played snare drum in the marching band. His passions included Boston sports teams, the HBO show Game of Thrones, and the Dave Matthews Band.
For the past 15 years, his parents, doctors Leslie Gordon and Scott Berns, dedicated themselves to learning about progeria. They created the Progeria Research Foundation at Children's Hospital, which conducted the first clinical drug trial to treat the disease.
Sam touched countless people during his life with his determination to stay positive — despite the challenges. He spoke at TEDx Mid-Atlantic last October, where he shared this philosophy:
"Being brave isn't supposed to be easy. And for me, I feel it's the key way to keep moving forward. So all in all, I don't waste energy feeling bad for myself, I surround myself with people that I want to be with, and I keep moving forward. So with this philosophy, I hope that all of you, regardless of your obstacles, can have a very happy life as well."
Radio Boston, "Researchers at Children’s Hospital Boston have made a significant breakthrough on an extremely rare and fatal disease. Progeria is a genetic disorder that causes rapid and premature aging in children. The children die due to heart attacks and stroke, with average age of death is 13. Progeria is caused by a single gene mutation, resulting in production of the protein progerin, which is an abnormal form of a protein that all of us have."
This story aired on January 17, 2014.
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