Sam Berns, Who Stirred the Hearts of Millions, Dies at 17
Teen with rare and often fatal rapid aging disease succumbed to complications from Progeria on Friday. He was 17.
PRF, which is headquartered in Peabody and which was founded by Sam's parents and now run by his aunt, announced the teen's passing over the weekend. The family lives in Foxborough.
Sam, who was diagnosed with Hutchinson-Gilford Progeria syndrome shortly before he turned two, has become the face of the organization and helped bring greater international attention to the disease. The life expectancy for those with Progeria is only 13.
Sam and his parents were also the main subjects of a recent HBO documentary, "Life According to Sam," and had recently teamed up with Robert Kraft and the New England Patriots to raise support for PRF's work.
The Patriots observed a moment of silence for Sam before Saturday night's game. Kraft also released a statement. As news spread, numerous other tributes were made in honor of Sam. You can find links to them on PRF's Facebook page.
Peabody, in addition to being PRF's home base, hosts an annual charitable road race during the International Festival and numerous local organizations have partnered with PRF over the years to raise awareness and support. Sam's mother Leslie grew up in Peabody and PRF Executive director Audrey Gordon is also still a resident.
PRF released the following statement on Saturday:
The family of Sam Berns confirmed today that he passed away Friday evening, January 10, due to complications from Progeria.
Sam, age 17, was diagnosed at 22 months of age with Progeria. His parents, Drs. Leslie Gordon and Scott Berns, established The Progeria Research Foundation in 1999 to find the cause, treatment and cure. Children with Progeria live an average of 13 years.
In 2013, HBO Documentaries broadcast the story of Sam Berns in Life According to Sam , and his courage and spirit moved everyone who came to know him personally or was inspired by his story. Sam also shared his life philosophy at TEDxMidAtlantic in October 2013.
The entire PRF community mourns the loss of this remarkable young man who not only inspired PRF's creation, but also touched millions of people worldwide.
The family requests privacy at this time until arrangements can be made. Expressions of sympathy and support may be expressed using #prfsam on Twitter and The Progeria Foundation Facebook page and/or directed to The Progeria Research Foundation at P.O. Box 3453, Peabody, MA 01961-3453.