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Life According to Sam
Life According to Sam
Life According to Sam
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Life According to Sam
Directed bySean Fine
Andrea Nix Fine
Produced bySean Fine
Andrea Nix Fine
Miriam Weintraub
StarringSam Berns
Music byKeegan DeWitt
Production
companies
Distributed byHBO
Release date
  • October 21, 2013 (2013-10-21)
Running time
94 minutes
CountryUnited States

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,[1] the documentary discloses the impact that progeria had on the lives of Sam Berns 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[2] and an Emmy Award for Exceptional Merit in Documentary Filmmaking.[3] It was also one of the 15 titles considered for nomination in the Documentary Feature category for the 86th Oscars.[4]

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

[edit]

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. 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, 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

[edit]
  • 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

[edit]

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, 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."[5]

Reception

[edit]

On the review aggregator website Rotten Tomatoes, 100% of 8 critics' reviews are positive, with an average rating of 7/10.[6] Dorothy Rabinowitz, of The Wall Street Journal, comments, "... nothing in this documentary equals the portrait of the unforgettable son they produced."[7] Duane Byrge from The Hollywood Reporter, 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."[8] Hank Stuever from The Washington Post claims: "The film is as much – or maybe more – about Sam's resiliently proactive mother, Leslie Gordon, as it is about Sam."[9]

Impact

[edit]

Robert Kraft, the owner of the New England Patriots, 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 to 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."[10]

Awards

[edit]

References

[edit]
[edit]
Revisions and contributorsEdit on WikipediaRead on Wikipedia

Life According to Sam

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Life According to Sam is a 2013 American documentary film directed by Sean Fine and Andrea Nix Fine that chronicles the life of teenager , who lived with Hutchinson–Gilford syndrome, a rare causing premature aging, and the tireless efforts of his physician parents to develop treatments through the Progeria Research Foundation they co-founded. The film premiered at the on January 21, 2013, and aired on on October 21, 2013, receiving widespread acclaim for its uplifting portrayal of resilience, family bonds, and scientific perseverance in the face of a fatal condition that typically limits life expectancy to the early teens. The documentary highlights ' extraordinary optimism and advocacy, including his participation in the first clinical drug trial for in 2007, which tested and showed promising results in stabilizing the disease's progression for some patients. Sam's parents, Dr. Leslie Gordon and Dr. Scott Berns, leveraged their medical expertise to establish the Research Foundation in 1999 after Sam's 1998 , raising awareness and funding that accelerated research into the LMNA gene mutation responsible for the syndrome. Through intimate footage, interviews with Sam, his family, and scientists, the film explores themes of hope and normalcy, such as Sam's involvement in and his candid discussions on living fully despite physical challenges like growth stunting, , and cardiovascular issues. Life According to Sam earned critical praise, achieving a 100% approval rating on based on eight reviews and winning a Primetime Emmy Award for Exceptional Merit in in 2014, underscoring its impact on public understanding of rare diseases. The film's narrative also extends to broader implications for genetic research, illustrating how Sam's story spurred international collaboration and policy changes, including FDA approval of for treatment in 2020, subsequent acquisitions of the drug, and ongoing clinical trials for additional therapies as of 2025. Tragically, passed away on January 10, 2014, at age 17, shortly after the film's release, but his legacy endures through the foundation's ongoing work and the documentary's role in inspiring for pediatric rare diseases.

Overview

Synopsis

Life According to Sam is a 94-minute HBO original documentary released in 2013, directed by Sean Fine and Andrea Nix Fine, that follows the life of teenager as he navigates the challenges of Hutchinson-Gilford syndrome, a rare causing rapid aging, while paralleling his parents' determined quest for treatments. The film interweaves Sam's vibrant daily experiences with the family's scientific endeavors, highlighting his resilience and the profound bond within the Berns household. The narrative begins with Sam's diagnosis in 1998 at 22 months old, when his parents, physicians Leslie Gordon and Scott Berns, learned of his condition and faced a prognosis of limited lifespan, typically around age 13 due to cardiovascular complications. Motivated by this, the family founded the Progeria Research Foundation (PRF) in 1999 to fund research and support affected children worldwide. The documentary portrays Sam's high school routine in , where he attends classes, builds intricate models, and actively participates in the as a dedicated percussionist, demonstrating his passion for music and community involvement despite mobility issues and fatigue. Family dynamics are central, showing the supportive role of his parents and how Sam's humor and optimism strengthen their resolve amid the emotional strain of his illness. Running alongside Sam's personal story is the family's research journey, including the 2003 identification of the LMNA gene mutation responsible for , a breakthrough achieved through PRF-funded efforts that mapped the genetic cause. This discovery paved the way for therapeutic advancements, culminating in the initiation of the first-ever for , a farnesyltransferase inhibitor, in May 2007, which brought children from 16 countries to for testing. The film captures these milestones as pivotal moments of hope, illustrating how parental advocacy transformed a previously understudied disease into a focus of global medical attention.

Themes

The documentary Life According to Sam centers on Sam's personal philosophy of embracing life's possibilities despite the constraints of , encapsulated in his three guiding principles: accepting what one cannot do to better appreciate what one can, surrounding oneself with supportive relationships, and continually moving forward with purpose. This outlook, articulated by Sam in his TEDx talk, underscores a motif of resilience that rejects pity and emphasizes agency, portraying not as a defining identity but as one aspect of a vibrant existence. Complementing this is the theme of family resilience, exemplified by Sam's parents—both physicians—who channeled their love into founding the Progeria Research Foundation, isolating the disease's genetic cause, and pioneering the first clinical drug trial to extend affected children's lives. Their determination highlights the intersection of intimate familial bonds with rigorous scientific pursuit, transforming personal tragedy into broader hope for medical advancement. Symbolic elements in the film reinforce these motifs, with Sam's participation in drum corps and serving as vivid representations of living fully amid physical challenges. As a percussionist in his high school , Sam embodies unyielding enthusiasm and social integration, defying the isolation often associated with . His candid addresses to the camera and audiences, such as declaring, "I put myself in front of you to let you know you don't need to feel bad for me," illustrate a youthful spirit that contrasts sharply with the premature aging imposed by the disease, symbolizing an inner vitality that transcends bodily limitations. The emotional arc of Life According to Sam masterfully balances humor, hope, and the shadow of impending , avoiding overt sentimentality through Sam's witty and the family's grounded . This structure evokes empathy while inspiring reflection on mortality and purposeful living, as Sam's story prompts viewers to consider how to make the most of finite time without descending into despair. The film's portrayal of bravery in everyday pursuits and scientific breakthroughs fosters a sense of shared humanity, emphasizing love and progress as antidotes to inevitable loss.

Background

Progeria Syndrome

Hutchinson-Gilford Syndrome (HGPS), also known as , is a rare, progressive that causes accelerated aging in children, with symptoms resembling those of advanced age appearing within the first two years of life. It has an estimated incidence of 1 in 4 to 8 million live births and affects approximately 400 children worldwide at any given time, occurring equally across races and genders. Characteristic symptoms include severe growth failure leading to short stature, with an average adult height of about 125 cm (4 feet 1 inch) and weight of 25 kg (55 pounds); alopecia (); loss of subcutaneous fat and muscle, resulting in a thin, aged appearance; scleroderma-like skin changes with wrinkles and rigidity; prominent eyes, a small jaw, and a beaked ; stiff joints; and, most critically, premature cardiovascular disease such as and . These manifestations contribute to an average lifespan of 14.5 years, with death usually resulting from heart attack or stroke. The genetic basis of HGPS involves a de novo in the LMNA gene on , which encodes lamin A, a key component of the that supports the . This specific (c.1824C>T in about 90% of cases) results in the production of a truncated, farnesylated protein called , which accumulates abnormally and destabilizes the , leading to cellular dysfunction, genomic instability, and the premature aging phenotype. The is autosomal dominant but almost always arises sporadically rather than being inherited. Diagnosis is typically established by age 2 through a combination of clinical assessment of physical features and molecular to identify the LMNA mutation via DNA analysis from a blood sample. At the time of the documentary Life According to Sam (2013), no existed for HGPS, with care centered on symptom management, such as for joint issues and medications to mitigate cardiovascular risks. This condition profoundly shaped the experiences of individuals like , the film's central figure.

Sam Berns

Sam Berns was born on October 23, 1996, in . At 22 months old, he was diagnosed with , a rare genetic disorder that causes accelerated aging. His parents, physicians Leslie Gordon and Scott Berns, responded to the diagnosis by co-founding the Progeria Research Foundation to advance research on the condition. Despite the physical challenges of , which limited his mobility and stamina, Berns maintained an optimistic outlook and pursued his interests with determination. He was a junior at Foxborough High School in , where he earned highest honors and served as percussion section leader in the , adapting by playing from a custom wagon pulled by friends. Berns cherished close friendships, often crediting them as essential to his happiness, and enjoyed hobbies such as watching the animated series . In October 2013, at age 17, he delivered a widely viewed TEDxMidAtlantic talk titled "My Philosophy for a Happy Life," where he outlined three core principles: focusing energy on what one can do rather than cannot, surrounding oneself with supportive friends, and remaining adaptable to change. Berns passed away on January 10, 2014, at his home in , at the age of 17, due to complications from . His death occurred shortly after the documentary Life According to Sam, which featured his story, aired in October 2013.

Research Efforts

Progeria Research Foundation

The Progeria Research Foundation (PRF) was established in 1999 by pediatrician Dr. Leslie Gordon and internist Dr. Scott Berns, following the 1998 diagnosis of their son Sam with Hutchinson-Gilford Syndrome at 22 months of age. Motivated by the scarcity of information, support for affected families, and dedicated research funding for the ultra-rare condition, the founders aimed to connect families worldwide, raise public awareness, educate medical professionals, and finance scientific efforts to uncover the disease's cause and develop treatments. As the only solely dedicated to Progeria at the time, PRF quickly prioritized building a collaborative network to address the previous century of neglect in studying the syndrome. In its early years, PRF achieved several milestones that accelerated research. In November 2001, PRF co-hosted the first-ever international workshop on with the (NIH) in , convening 46 scientists from diverse fields to identify research priorities and foster global collaboration. This event built momentum for breakthroughs, culminating in 2003 when PRF's partnerships with NIH and international researchers contributed to the discovery of the LMNA gene mutation as the primary cause of classic , enabling the development of a diagnostic test. Headquartered in , PRF evolved into a centralized hub for resources, expanding to maintain the PRF International Patient Registry under Dr. Gordon's leadership to track cases globally and facilitate clinical data collection. The organization also grew to nurture family networks through educational programs, support services, and annual gatherings, ensuring affected families had access to shared experiences and updated medical guidance despite the disease's rarity.

Treatment Developments

Early research efforts funded by the Progeria Research Foundation (PRF) culminated in the launch of the first for , a farnesyltransferase inhibitor, in 2007. This trial targeted the farnesylation process essential for the function of , the toxic protein produced due to a in the LMNA gene. The study enrolled 25 children with Hutchinson-Gilford progeria syndrome (HGPS) from around the world, including , who participated starting at age 11. By 2012, Phase II results demonstrated that treatment led to improvements in vascular stiffness, density, and hearing, while also slowing the rate of weight gain—a key indicator of reduced aging progression compared to untreated peers. The extreme rarity of HGPS, affecting approximately one in four to eight million births and impacting fewer than 100 children globally at any time, posed significant logistical challenges to design and execution. International recruitment was essential, drawing participants from over 30 countries to achieve adequate sample sizes, but this required coordinated efforts across borders and cultures. Ethical concerns were paramount, particularly regarding the enrollment of pediatric patients in experimental therapies for a uniformly fatal condition with no prior treatments; while the potential benefits justified the risks under oversight, the absence of controls in later analyses stemmed from moral imperatives to provide active drug to all eligible children. Key pre-film milestones included the U.S. Food and Drug Administration's (FDA) orphan drug designation for lonafarnib in treating HGPS on April 18, 2011, which facilitated accelerated development incentives for the rare disease. The trials also benefited from collaboration with Merck & Co., which supplied lonafarnib free of charge for PRF-supported studies, enabling the evaluation of this repurposed oncology agent in a pediatric context. These advancements, highlighted in the documentary through Sam's personal experience, underscored the rapid translation from basic science to clinical intervention within a decade of the 2003 gene discovery. Building on these efforts, lonafarnib received full FDA approval for treating HGPS on November 20, 2020, marking the first approved therapy for the condition. As of 2025, ongoing research includes Phase 2 clinical trials for new treatments like Progerinin and preclinical RNA therapies showing promise in reversing symptoms in mouse models.

Production

Development

The documentary Life According to Sam was directed by the husband-and-wife team of Sean Fine and Andrea Nix Fine, Academy Award winners for their 2012 short documentary Inocente. The Fines, who had previously won Emmy Awards for feature-length works like War/Dance, brought their expertise in intimate, character-driven storytelling to the project. The concept originated from the Fines' encounter with and his family, whom they met at a restaurant near , during initial outreach. Inspired by Sam's resilient outlook on life despite his diagnosis and the Berns family's dedication to advancing through the Progeria Research Foundation (PRF), the filmmakers sought to capture this universal story of hope and scientific pursuit. Development began around 2010, with the Fines securing unprecedented access to the Berns family, who had previously declined media requests to maintain focus on their advocacy efforts. This phase emphasized building trust and conducting preliminary into progeria's rarity—affecting fewer than 250 children worldwide at the time—and the PRF's ongoing clinical initiatives. Funding and production support came from , which backed the project as an original feature and encouraged its expansion despite initial delays in key scientific milestones, such as the publication of a paper by Sam's mother, Dr. Leslie Gordon. The collaboration with the PRF ensured authenticity, providing the filmmakers with insights into the foundation's research ecosystem while aligning the narrative with the organization's mission to accelerate treatments for Hutchinson-Gilford syndrome. This partnership shaped the documentary's structure, prioritizing the intersection of and medical breakthroughs during .

Filming and Editing

The documentary was filmed over three years, from 2010 to 2012, beginning when subject Sam Berns was 13 years old. Shooting took place primarily in Foxborough, Massachusetts, where the Berns family resided; Providence, Rhode Island, connected to the parents' research affiliations at Brown University; and Boston, site of medical visits and clinical trials at Boston Children's Hospital. Directors Sean Fine and Andrea Nix Fine gained intimate access to Berns's daily life, including his time at Foxborough High School, family home, and healthcare appointments, capturing the progression of his condition and his parents' scientific efforts. Ethical considerations were paramount in portraying a minor with a terminal illness; the filmmakers adhered to Berns's explicit request to avoid evoking pity, focusing instead on his agency and normalcy to ensure an authentic representation without exploitation. Key scenes employed a style to immerse viewers in unscripted moments, such as Berns's practices as percussion section leader in the Foxborough High School and candid family discussions about living with . The film also incorporated interviews with progeria experts, including researchers involved in the first clinical drug trial led by Berns's mother, Leslie Gordon, to contextualize the medical stakes. This approach highlighted Berns's humor, resilience, and passions—like Legos and sports—amid the disease's realities, blending personal footage with explanatory segments on the . In , the footage was assembled into a 94-minute final cut that prioritized emotional authenticity, balancing intimate family dynamics with the rigor of scientific pursuit to underscore themes of hope without sentimentality. The process involved structuring complex layers—scientific explanations, personal milestones, and hospital routines—into a cohesive , drawing on visual inspirations to elevate ordinary moments into cinematic ones. An original score composed by Keegan DeWitt complemented the , using subtle, uplifting motifs to reinforce the film's of purposeful living.

Release

Premiere and Broadcast

Life According to Sam had its world premiere at the on January 21, 2013, as part of the U.S. Documentary Competition. The film was nominated for the Grand Jury Prize in the U.S. Documentary category at the festival. Directed by Sean Fine and Andrea Nix Fine, it introduced audiences to and the efforts of his parents to combat through research and advocacy. Following its Sundance debut, the documentary screened at additional festivals in 2013, including the Full Frame Documentary Film Festival, where it received the Audience Award for Best Feature. These early showings helped build momentum for the film's wider release and heightened public interest in progeria research. The broadcast premiere aired on HBO on October 21, 2013, at 9:00 p.m. ET. Prior to the airing, a New York premiere event took place on October 8, 2013, at the HBO Theater, attended by Sam Berns, his father Dr. Scott Berns, and other family members. The HBO release was strategically timed to coincide with awareness campaigns by the Progeria Research Foundation, amplifying efforts to fund clinical trials and support affected families.

Distribution and Availability

Following its HBO television premiere, Life According to Sam was released on DVD on April 1, 2014, distributed by Warner Home Video and available for purchase through major retailers including Amazon. The DVD edition includes bonus features such as Sam's TEDx talk "My Philosophy for a Happy Life" and updates from the Research Foundation (PRF) on ongoing research efforts. The documentary became available for streaming on 's platforms, with video-on-demand release on March 31, 2014, and integration into HBO Max (now Max) following the service's launch in May 2020, where it remains accessible to subscribers. It has aired in reruns on HBO cable channels and is offered internationally through 's global broadcasters and festival circuits, including screenings at events beyond its Sundance debut. For educational purposes, the film is licensed for use in schools and medical training programs, with the PRF providing a free classroom discussion guide that includes lesson plans on progeria biology, scientific problem-solving, and empathy-building activities to facilitate screenings. The PRF also offers free clips from the documentary on its YouTube channel, such as post-premiere Q&A sessions and promotional segments featuring Sam Berns, to support awareness initiatives in educational settings.

Reception

Critical Response

"Life According to Sam" received universal critical acclaim for its sensitive handling of a difficult subject, earning a 100% approval rating on based on eight reviews. Critics praised the documentary for its emotional depth and non-exploitative portrayal of and his family, avoiding sentimentality while highlighting their resilience and advocacy efforts. In a review, Variety described the film as a "straightforward, solidly crafted inspirational tale" that chronicles the family's real-life pursuit of a cure for . commended directors Sean Fine and Andrea Nix Fine for their compassionate approach, noting the film's poignant yet unsentimental depiction of Sam's life. The documentary's artistic and journalistic excellence was recognized with prestigious awards, including the 2013 Peabody Award for excellence in electronic media. It also won a 2014 Primetime Emmy Award for Exceptional Merit in Documentary Filmmaking.

Audience Impact

The documentary Life According to Sam resonated deeply with audiences, evoking strong emotional responses centered on inspiration from Sam Berns' optimistic outlook despite living with progeria. Viewers frequently described feeling a profound sense of hope amid the tragedy of his condition, often leading to tears and heartfelt discussions about resilience and embracing life fully. As Robert Kraft, owner of the New England Patriots, noted after viewing the film, it would "make you laugh. It will make you cry. And…motivate people to want to do more to help." This emotional impact prompted immediate actions from viewers, including heightened support for research. At the New York premiere on October 8, 2013, pledged to match donations up to $500,000 to the Progeria Research Foundation (PRF), directly inspired by Sam's story and aimed at expanding clinical trials for children with the disease. The broadcast also significantly raised global awareness of and PRF's mission, translating into increased viewer engagement and contributions that bolstered the foundation's efforts. Personal anecdotes from families affected by rare diseases further illustrate the film's motivational influence, with many reporting renewed determination to face their own challenges after witnessing Sam's approach to life. The documentary's exposure amplified Sam's November 2013 TEDxMidAtlantic talk, "My philosophy for a happy life," where he shared three rules for happiness—focusing on passions, surrounding oneself with positivity, and moving forward—which has since inspired millions worldwide, amassing over 100 million views across TED and TEDx platforms as of 2023, and reinforced themes of resilience.

Legacy

Awareness and Advocacy

The documentary Life According to Sam significantly elevated public awareness of , a rare causing premature aging in children, by showcasing the daily life and optimism of its subject, , and the efforts of the Progeria Research Foundation (PRF). Premiering at the in January 2013 and airing on in October 2013, the film reached millions through its broadcast and subsequent streaming availability, introducing progeria to audiences unfamiliar with the condition that affects approximately 400 children worldwide. PRF leveraged the film's momentum for advocacy campaigns, including the initiatives #LiveLikeSam and #SamBerns, which encouraged viewers to embrace positivity and support research, amplifying the foundation's mission to fund clinical trials and family support programs. The film's media exposure extended to major outlets such as , , ABC News, and , where it was profiled for humanizing the challenges of living with progeria and highlighting the need for greater visibility for ultra-rare diseases. In terms of advocacy outcomes, Life According to Sam catalyzed increased discussions on funding for rare diseases, prompting high-profile donations and broader policy conversations in the United States. Following the film's New York premiere, New England Patriots owner announced a $500,000 matching gift challenge to expand PRF's efforts, directly attributing the commitment to the documentary's emotional impact. The film also contributed to heightened advocacy for development, as evidenced by its reference in a 2016 op-ed by the National Organization for Rare Disorders (NORD) in The Hill, which invoked Sam's story to urge to strengthen incentives under the Orphan Drug Act for treating the 7,000 known rare diseases affecting 30 million Americans. Its global reach was furthered through international distributions and translations, fostering worldwide solidarity and encouraging similar advocacy in and beyond, where awareness had previously been limited. The documentary left a notable cultural footprint by influencing educational and medical communities, with screenings at events like the AFI DOCS festival and its integration into awareness programs. It inspired academic and journalistic works exploring life with , including the 2021 book Extraordinary Forms of Aging: Life Narratives of Centenarians and Children with Progeria, which analyzes the film's portrayal of Sam's resilience as a lens for understanding accelerated aging narratives. Additionally, articles in prestigious journals such as referenced the documentary to discuss clinical and social implications, while PRF's educational guide for classrooms drew on the film to teach about , ensuring its role in ongoing medical conferences and advocacy training.60472-4/fulltext)

Post-Documentary Advances

Following the release of Life According to Sam in 2013, research into Hutchinson-Gilford progeria syndrome (HGPS) gained significant momentum, leading to key therapeutic milestones. In November , the U.S. (FDA) approved lonafarnib, marketed as Zokinvy, as the first treatment for HGPS and processing-deficient progeroid laminopathies in patients aged 12 months and older. This farnesyltransferase inhibitor, developed through ()-coordinated clinical trials, demonstrated a mean lifespan extension of 2.5 years compared to untreated patients, representing approximately a 17% increase in survival probability through up to 11 years of follow-up. Additionally, -led trials of lonafarnib showed improvements in cardiovascular function, including enhanced vascular stiffness and reduced mortality risk by up to 80% in treated children versus untreated controls. These outcomes marked a pivotal shift, providing the first evidence-based intervention to mitigate HGPS progression. Building on this foundation, recent advancements have focused on gene-editing approaches to address the root genetic cause of HGPS, a in the LMNA gene leading to toxic accumulation. As of 2025, CRISPR-based therapies remain in preclinical stages, with studies demonstrating efficacy in models by correcting the and extending lifespan by over 100%. For instance, CRISPR-Cas9 and Cas13 variants have shown promise in reducing production and reversing vascular phenotypes in cellular and animal models. An August 2025 New Yorker article highlighted these developments, detailing PRF's gene-editing efforts and suggesting that a cure for HGPS is now plausible for the first time, potentially informing broader aging research. Complementing this, PRF's ongoing international clinical studies, including the 2025 Progerinin trial combining with , aim to further enhance cardiovascular and systemic outcomes in global cohorts. Sam Berns' story, amplified by , has been credited with accelerating funding and infrastructure for HGPS. The film's impact prompted immediate pledges, such as a $500,000 matching gift from owner to expand PRF clinical trials. This momentum contributed to the growth of PRF's International Progeria Registry, which by September 2025 included 153 diagnosed children and young adults worldwide, facilitating data-driven advancements.

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  37. https://www.biospace.com/fda/us-fda-authorizes-launch-of-clinical-trial-to-support-new-treatment-development-for-progeria
  38. https://www.news-medical.net/news/20250729/New-RNA-therapy-reverses-symptoms-of-progeria-in-mouse-models.aspx
  39. https://www.documentary.org/online-feature/oscar-bound-inocente-directors-sean-and-andrea-fine
  40. https://www.imdb.com/title/tt0912599/awards/
  41. https://moveablefest.com/sean-fine-andrea-nix-fine-life-according-sam/
  42. https://www.bostonherald.com/2013/10/21/hbo-documentary-tells-about-foxboro-teens-life-with-progeria/
  43. https://search.worldcat.org/title/Life-according-to-Sam/oclc/876859682
  44. https://www.imdb.com/title/tt2558550/awards
  45. https://africanfilmny.org/directors/sean-fine/
  46. https://globalgenes.org/blog/life-according-to-sam-airing-on-hbo-october-21st/
  47. https://www.gettyimages.com/detail/news-photo/dr-scott-berns-and-sam-berns-attend-the-new-york-premiere-news-photo/183672335
  48. https://www.amazon.com/Life-According-Sam-n/dp/B00JEGO83G
  49. https://www.progeriaresearch.org/2014/05/15/life-according-to-sam-wins-emmy-buy-share-the-dvd/
  50. https://m.facebook.com/ProgeriaResearch/photos/a.147192775313183/807401219292332/?type=3
  51. https://www.documentary.org/feature/journey-academy-awards-investigation-oscar-shortlisted-and-nominated-documentaries-2014-2016
  52. https://www.youtube.com/playlist?list=PLio7GaXoQ3Sj-Md9k6VWQp7RsxsdZjjm6
  53. https://www.youtube.com/watch?v=4Llvi_rUJ8k
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  55. https://www.prnewswire.com/news-releases/powerful-hbo-documentary-moves-new-england-patriots-owner-to-pledge-up-to-500000-to-progeria-research-foundation-227286551.html
  56. https://www.progeriaresearch.org/2023/10/15/sam-berns-tedx-hits-100-million/
  57. https://www.asbmb.org/asbmb-today/science/022521/progeria-from-the-unknown-to-the-first-fda-approve
  58. https://rarediseases.org/the-hill-publishes-nord-op-ed-congress-must-act-now-to-help-15-million-sick-children/
  59. https://www.tandfonline.com/doi/full/10.1517/21678707.2014.970172
  60. https://abcnews.go.com/Entertainment/afi-docs-film-festival-2013-film-line/story?id=19243221
  61. https://library.oapen.org/bitstream/id/6d49704a-3316-4a95-b49f-e43261986f7d/9783839462775.pdf
  62. https://www.accessdata.fda.gov/drugsatfda_docs/appletter/2020/213969Orig1s000ltr.pdf
  63. https://www.accessdata.fda.gov/drugsatfda_docs/nda/2020/213969Orig1s000IntegratedR.pdf
  64. https://jamanetwork.com/journals/jama/fullarticle/2679278
  65. https://www.progeriaresearch.org/2025/08/08/gene-editing/
  66. https://www.sciencedirect.com/science/article/pii/S152500162500468X
  67. https://www.newyorker.com/magazine/2025/08/18/how-an-ultra-rare-disease-accelerates-aging
  68. https://www.progeriaresearch.org/2025/06/29/progerinin-drug-trial/
  69. https://www.progeriaresearch.org/meet-the-kids/
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