Life According To Sam
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''Life According to Sam'' is an
HBO Home Box Office (HBO) is an American premium television network, which is the flagship property of namesake parent subsidiary Home Box Office, Inc., itself a unit owned by Warner Bros. Discovery. The overall Home Box Office business unit is ba ...
original documentary film directed by
Sean Fine Sean Fine is an American cinematographer, producer and film director whose film '' Inocente'' won the 2013 Academy Award for Best Documentary (Short Subject). He directs his films with his wife, Andrea Nix Fine. The Fines' first feature-length ...
and
Andrea Nix Fine Andrea Nix Fine is an American documentary film director whose film '' Inocente'' won the Academy Award for Best Documentary (Short Subject) in 2013. She directs her films with her husband, Sean Fine. The Fines were also nominated for the Acade ...
. Premiering in January 2013 at the
Sundance Film Festival The Sundance Film Festival (formerly Utah/US Film Festival, then US Film and Video Festival) is an annual film festival organized by the Sundance Institute. It is the largest independent film festival in the United States, with more than 46,66 ...
, the documentary discloses the impact that
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 ...
had on the lives of
Sam Berns Sampson Gordon Berns (October 23, 1996 – January 10, 2014) was an American activist with progeria, 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 ...
and his parents, Dr. Leslie Gordon and Dr. Scott Berns. It was broadcast on HBO in October 2013, and since then it has won a 2013
Peabody Award The George Foster Peabody Awards (or simply Peabody Awards or the Peabodys) program, named for the American businessman and philanthropist George Peabody, honor the most powerful, enlightening, and invigorating stories in television, radio, and ...
and an
Emmy Award The Emmy Awards, or Emmys, are an extensive range of awards for artistic and technical merit for the American and international television industry. A number of annual Emmy Award ceremonies are held throughout the calendar year, each with the ...
for Exceptional Merit in Documentary Filmmaking. It was also one of the 15 titles considered for nomination in the Documentary Feature category for the 86th
Oscars The Academy Awards, better known as the Oscars, are awards for artistic and technical merit for the American and international film industry. The awards are regarded by many as the most prestigious, significant awards in the entertainment ind ...
. Told from the personal point of view of Sam, his parents, and other families suffering from the effects of progeria, the documentary raises awareness on this currently incurable disease. It informs and educates the audience on what progeria is, what it means for patients, and calls attention to the need for research on treatment.


Synopsis

The documentary concerns the young teen, Sampson Gordon Berns, one of the few hundreds of patients around the world diagnosed with progeria. As stated in the film, progeria is an extremely rare and fatal genetic disease also referred to as premature aging syndrome. When Sam was diagnosed, nothing was known about the disease genetically, and there was no treatment nor cure. The prognosis was that he was likely to die around the age of 13, as was the average for progeria patients. Sam's mom, Dr. Leslie Gordon, was in her first year of medical residency when he was diagnosed at around the age of two and had to change her course of plan accordingly. The film features both of his parents discussing how their lives changed after the diagnosis. After six months of the diagnosis, Dr. Leslie Gordon, Dr. Scott Berns, and Sam's aunt, Audrey Gordon, founded 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 ...
. They were able to raise $1.25 million for research, which led to the discovery of the gene responsible for the disease. The film includes the journey that Dr. Leslie Gordon underwent in trying to find a successful treatment for the disease. Experimenting with a drug being used for similar protein abnormalities,
Lonafarnib Lonafarnib, sold under the brand name Zokinvy, is a medication used to reduce the risk of death due to Hutchinson-Gilford progeria syndrome and for the treatment of certain processing-deficient progeroid laminopathies in people one year of age ...
, Leslie meets other children with progeria to conduct clinical trials that would last two years and a half. The children and their parents are interviewed, and they discuss their experiences with progeria and their thoughts on Leslie's trial. Since the number of progeria patients is so limited and treatment was a matter of ethics, Leslie made a critical decision that would lead to issues concerning earning a publication of the study from a peer-reviewed journal. Meanwhile, Sam manages to participate in sports and hobbies that would prove difficult for progeria patients, and Scott makes time for therapeutic activities for Sam.


Cast

* Sampson "Sam" Gordon Berns * Leslie B. Gordon, M.D., Ph.D. * Dr. Scott D. Berns * Audrey Gordon * Sumaira * Priya * Niccolo * Megan * Devin * Zoey * Dr. Kleinman


Production

When the married directors, Sean Fine and Andrea Nix Fine, first met Sam, Sam told them, "I think we are all going to be very good friends here. There are other films that have been out there on progeria, and I don't want this film to be like those films. I don't ever want people to feel sorry for me. That is the one thing I am going to ask you guys." When the directors started filming, Dr. Leslie Gordon had already begun her first set of clinical trials using Lonafarnib on 26 progeria patients. According to
Los Angeles Times The ''Los Angeles Times'' (abbreviated as ''LA Times'') is a daily newspaper that started publishing in Los Angeles in 1881. Based in the LA-adjacent suburb of El Segundo since 2018, it is the sixth-largest newspaper by circulation in the Un ...
, Sean Fine claimed that they thought the trials would be finished in a year, but "(they) didn't realize how hard it is to get a scientific paper published. That made the film take three years." The filmmakers also claim getting close to Sam during that time and admiring him for the fun kid that he was. It was also stated that Sam watched the finished film by himself before anyone else, including his parents, did. In an e-mail interview, Sam announced, "I wanted to be able to process what was on screen and to be able to watch it and react without having to worry about other people's reactions at the same time watching it."


Reception

Dorothy Rabinowitz, of
The Wall Street Journal ''The Wall Street Journal'' is an American business-focused, international daily newspaper based in New York City, with international editions also available in Chinese and Japanese. The ''Journal'', along with its Asian editions, is published ...
, comments, "... nothing in this documentary equals the portrait of the unforgettable son they produced." Duane Byrge from ''
The Hollywood Reporter ''The Hollywood Reporter'' (''THR'') is an American digital and print magazine which focuses on the Cinema of the United States, Hollywood film industry, film, television, and entertainment industries. It was founded in 1930 as a daily trade pap ...
'', who attended the premiere at the Sundance Film Festival, reported that the audience stayed after the film for the Q&A- "a sure sign that they loved the movie." Moved by the inspirational approach that Sam and his family took upon his diagnosis, the bottom line quote for ''The Hollywood Reporter'' was posted as, "Wise and uplifting film about one young boy's graceful resilience against a rare terminal disease." Hank Stuever from ''
The Washington Post ''The Washington Post'' (also known as the ''Post'' and, informally, ''WaPo'') is an American daily newspaper published in Washington, D.C. It is the most widely circulated newspaper within the Washington metropolitan area and has a large nati ...
'' claims: "The film is as much – or maybe more – about Sam's resiliently proactive mother, Leslie Gordon, as it is about Sam."


Impact

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, ...
, the owner of 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 ...
, saw the film at the premiere in New York City and met Sam at a team practice. He felt inspired and impassioned, and he donated a $500,000 matching gift support and fund the expansion of the Progeria clinical trials. It was reported that he commented, "This is a must-see film. It will make you laugh. It will make you cry. And, most importantly, I think it will motivate people to want to do more to help."


Awards

* 2013 Peabody Award * Emmy Award for Exceptional Merit in Documentary Filmmaking *
Christopher Award The Christopher Award (established 1949) is presented to the producers, directors, and writers of books, films and television specials that "affirm the highest values of the human spirit". It is given by The Christophers, a Christian organization ...
* "Best of Fest" at the
American Film Institute The American Film Institute (AFI) is an American nonprofit film organization that educates filmmakers and honors the heritage of the motion picture arts in the United States. AFI is supported by private funding and public membership fees. Leade ...
Docs Film Festival in Washington, DC * Audience Award:
Nantucket Nantucket () is an island about south from Cape Cod. Together with the small islands of Tuckernuck and Muskeget, it constitutes the Town and County of Nantucket, a combined county/town government that is part of the U.S. state of Massachuse ...
,
Martha's Vineyard Film Festival The Martha's Vineyard Film Festival (MVFF) is an annual film festival founded in 2001 and held in West Tisbury, Massachusetts, on the island of Martha's Vineyard. The festival takes place in March. The MVFF also produces a summer film series in Ju ...
s, Woods Hole,
Boston Jewish Film Festival The Boston Jewish Film Festival (BJFF) is an annual film festival that screens the best contemporary films on Jewish themes from around the world. The festival presents features, shorts, documentaries, and conversations with visiting artists in o ...
, and Newbury Port * Norman Vaughan Indomitable Spirit Award: Mountain Film Festival, Colorado * Best Storytelling Award: Nantucket, and MA Film Festivals * Best Feature Documentary: Woods Hole, Rhode Island International Film Festivals, New Hampshire, MA Film Festivals


References


External links

* https://www.progeriaresearch.org/ * {{HBO documentaries HBO documentary films 2013 films 2013 documentary films Documentary films about children with disability Films directed by Sean Fine and Andrea Nix Films scored by Keegan DeWitt Peabody Award-winning broadcasts 2010s American films