Sam Berns
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Sampson Gordon Berns (October 23, 1996 – January 10, 2014) was an American activist with
progeria Progeria is a specific type of progeroid syndrome, also known as Hutchinson–Gilford syndrome. A single gene mutation is responsible for progeria. The gene, known as lamin A (LMNA), makes a protein necessary for holding the Nucleus of the cell ...
, an extremely rare and fatal disease that causes the body to age rapidly. Sam helped raise awareness about the disease and he was the subject of the HBO documentary ''
Life According to Sam ''Life According to Sam'' is an HBO original documentary film directed by Sean Fine and Andrea Nix Fine. Premiering in January 2013 at the Sundance Film Festival, the documentary discloses the impact that progeria had on the lives of Sam Berns and ...
'', which was first screened in January 2013.


Progeria Research Foundation

His parents, Scott Berns and Leslie Gordon, both
pediatrician Pediatrics ( also spelled ''paediatrics'' or ''pædiatrics'') is the branch of medicine that involves the medical care of infants, children, adolescents, and young adults. In the United Kingdom, paediatrics covers many of their youth until the ...
s, received their son's diagnosis when he was less than two years old. Roughly a year later, they established the
Progeria Research Foundation The Progeria Research Foundation (PRF) is a non-profit organization dedicated to developing treatments and, ultimately, a cure for progeria, a congenital disorder. The Foundation was established in 1999 by the family and friends of Sam Berns, a chi ...
in an effort to increase awareness of the condition, to promote research into the underlying causes of and possible treatments for the disease. Moreover, they offer resources for the support of those with progeria and their families.


Honors


Boston Bruins

On November 9, 2013, at a home game for the
Boston Bruins The Boston Bruins are a professional ice hockey team based in Boston. The Bruins compete in the National Hockey League (NHL) as a member of the Atlantic Division in the Eastern Conference. The team has been in existence since 1924, making t ...
, Berns helped host Progeria Awareness Night, sat with the team as an assistant equipment manager, and dropped the ceremonial first puck for that night's game against the
Toronto Maple Leafs The Toronto Maple Leafs (officially the Toronto Maple Leaf Hockey Club and often referred to as the Leafs) are a professional ice hockey team based in Toronto. They compete in the National Hockey League (NHL) as a member of the Atlantic Div ...
. Berns and
Zdeno Chára Zdeno Chára (; born 18 March 1977) is a Slovak former professional ice hockey defenceman. He played 24 seasons in the National Hockey League (NHL) for the New York Islanders, Ottawa Senators, Boston Bruins, and Washington Capitals between 1997 a ...
, the Bruins captain, had been strong friends since 2006, when Berns attended a Bruins game and met Chára afterwards. Chára had scored in that game and Berns blurted out "You're the hero!". Chára responded: "No, no, you're my hero, our hero." On January 14, 2014, the Bruins honored Berns with a moment of silence and a video tribute before the start of the game.


New England Patriots

Berns was to be an honorary captain when the
New England Patriots The New England Patriots are a professional American football team based in the Greater Boston area. They compete in the National Football League (NFL) as a member club of the league's American Football Conference (AFC) AFC East, East divisio ...
hosted the
Indianapolis Colts The Indianapolis Colts are a professional American football team based in Indianapolis. The Colts compete in the National Football League (NFL) as a member club of the league's American Football Conference (AFC) South division. Since the 2008 ...
in a divisional playoff game on January 11, 2014; however, he died on January 10, the evening before the game. Patriots Chairman and CEO
Robert Kraft Robert Kenneth Kraft (born June 5, 1941) is an American billionaire businessman. He is the chairman and chief executive officer (CEO) of the Kraft Group, a diversified holding company with assets in paper and packaging, sports and entertainment, ...
issued a statement on the news of the passing of Berns. "I loved Sam Berns and am richer for having known him," Kraft said.


TED Talk, Sam Berns

"My Philosophy for a Happy Life" was recorded in 2013 by Sam Berns at the TEDxMidAtlantic and has been viewed over 49 million times (as of September 2022).


''Life According to Sam''

''
Life According to Sam ''Life According to Sam'' is an HBO original documentary film directed by Sean Fine and Andrea Nix Fine. Premiering in January 2013 at the Sundance Film Festival, the documentary discloses the impact that progeria had on the lives of Sam Berns and ...
'' is a 2013 documentary film based on the life of Sam Berns and has been shown at film festivals, including Sundance, and it was broadcast on HBO in October. The Academy of Motion Picture Arts and Sciences said it is among 15 documentaries considered for Oscar nominations.


See also

*
Hayley Okines Hayley Leanne Okines (3 December 1997 – 2 April 2015) was an English author and activist who was a sufferer of the extremely rare aging disease progeria. She was known for spreading awareness of the condition. Although the average life e ...
 — English girl who had progeria and was the subject of television specials both in Europe and in the United States. * Lizzie Velásquez — American motivational speaker with a similar but non-terminal medical condition (
Marfanoid–progeroid–lipodystrophy syndrome Marfanoid–progeroid–lipodystrophy syndrome (MPL), also known as Marfan lipodystrophy syndrome (MFLS) or progeroid fibrillinopathy, is an extremely rare medical condition which manifests as a variety of symptoms including those usually associat ...
).


References


External links


Progeria Research FoundationHBO: Documentaries , Life According to Sam , Home
* ttps://www.youtube.com/watch?v=36m1o-tM05g My Philosophy for a Happy Life: Sam Berns gives a lecture at TEDxMidAtlantic 2013br>Sam Berns, 'remarkable' teen who battled rare rapid aging disease, progeria, dies at age 17
{{DEFAULTSORT:Berns, Sam 1996 births 2014 deaths American people with disabilities People from Foxborough, Massachusetts People from Providence, Rhode Island People with progeria American child activists Activists from Massachusetts Activists from Rhode Island