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Life According to Sam

Life According to Sam is a 2013 American documentary film directed by Sean Fine and Andrea Nix Fine that chronicles the life of teenager Sam Berns, who lived with Hutchinson–Gilford progeria syndrome, a rare genetic disorder causing premature aging, and the tireless efforts of his physician parents to develop treatments through the Progeria Research Foundation they co-founded.^[1]^[2] The film premiered at the Sundance Film Festival on January 21, 2013, and aired on HBO 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.^[3]^[4] The documentary highlights Sam Berns' extraordinary optimism and advocacy, including his participation in the first clinical drug trial for progeria in 2007, which tested lonafarnib and showed promising results in stabilizing the disease's progression for some patients.^[1] Sam's parents, Dr. Leslie Gordon and Dr. Scott Berns, leveraged their medical expertise to establish the Progeria Research Foundation in 1999 after Sam's 1998 diagnosis, raising awareness and funding that accelerated research into the LMNA gene mutation responsible for the syndrome.^[5] Through intimate footage, interviews with Sam, his family, and scientists, the film explores themes of hope and normalcy, such as Sam's involvement in marching band and his candid discussions on living fully despite physical challenges like growth stunting, hair loss, and cardiovascular issues.^[4]^[2] Life According to Sam earned critical praise, achieving a 100% approval rating on Rotten Tomatoes based on eight reviews and winning a Primetime Emmy Award for Exceptional Merit in Documentary Filmmaking in 2014, underscoring its impact on public understanding of rare diseases.^[5] 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 lonafarnib for progeria treatment in 2020, subsequent acquisitions of the drug, and ongoing clinical trials for additional therapies as of 2025.^[1] Tragically, Sam Berns 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 advocacy for pediatric rare diseases.^[3]

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 Sam Berns as he navigates the challenges of Hutchinson-Gilford progeria syndrome, a rare genetic disorder causing rapid aging, while paralleling his parents' determined quest for treatments.^[2] 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.^[6] 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.^[7] Motivated by this, the family founded the Progeria Research Foundation (PRF) in 1999 to fund research and support affected children worldwide.^[8] The documentary portrays Sam's high school routine in Foxborough, Massachusetts, where he attends classes, builds intricate Lego models, and actively participates in the marching band as a dedicated percussionist, demonstrating his passion for music and community involvement despite mobility issues and fatigue.^[9] 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.^[10] Running alongside Sam's personal story is the family's research journey, including the 2003 identification of the LMNA gene mutation responsible for progeria, a breakthrough achieved through PRF-funded efforts that mapped the genetic cause.^[11] This discovery paved the way for therapeutic advancements, culminating in the initiation of the first-ever clinical trial for lonafarnib, a farnesyltransferase inhibitor, in May 2007, which brought children from 16 countries to Boston Children's Hospital for testing.^[12] 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.^[13]

Themes

The documentary Life According to Sam centers on Sam's personal philosophy of embracing life's possibilities despite the constraints of progeria, 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.^[14] This outlook, articulated by Sam in his TEDx talk, underscores a motif of resilience that rejects pity and emphasizes agency, portraying progeria not as a defining identity but as one aspect of a vibrant existence.^[6] 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.^[6] Their determination highlights the intersection of intimate familial bonds with rigorous scientific pursuit, transforming personal tragedy into broader hope for medical advancement.^[4] Symbolic elements in the film reinforce these motifs, with Sam's participation in drum corps and public speaking serving as vivid representations of living fully amid physical challenges. As a percussionist in his high school marching band, Sam embodies unyielding enthusiasm and social integration, defying the isolation often associated with progeria.^[6] 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.^[4] The emotional arc of Life According to Sam masterfully balances humor, hope, and the shadow of impending tragedy, avoiding overt sentimentality through Sam's witty self-awareness and the family's grounded optimism. 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.^[4] 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.^[15]

Background

Progeria Syndrome

Hutchinson-Gilford Progeria Syndrome (HGPS), also known as progeria, is a rare, progressive genetic disorder 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.^[16]^[17] 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 (hair loss); 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 nose; stiff joints; and, most critically, premature cardiovascular disease such as atherosclerosis and hypertension. These manifestations contribute to an average lifespan of 14.5 years, with death usually resulting from heart attack or stroke.^[16]^[18]^[19] The genetic basis of HGPS involves a de novo point mutation in the LMNA gene on chromosome 1, which encodes lamin A, a key component of the nuclear lamina that supports the cell nucleus. This specific mutation (c.1824C>T in about 90% of cases) results in the production of a truncated, farnesylated protein called progerin, which accumulates abnormally and destabilizes the nuclear envelope, leading to cellular dysfunction, genomic instability, and the premature aging phenotype. The mutation is autosomal dominant but almost always arises sporadically rather than being inherited.^[18]^[17] Diagnosis is typically established by age 2 through a combination of clinical assessment of physical features and molecular genetic testing to identify the LMNA mutation via DNA analysis from a blood sample. At the time of the documentary Life According to Sam (2013), no cure existed for HGPS, with care centered on symptom management, such as physical therapy for joint issues and medications to mitigate cardiovascular risks. This condition profoundly shaped the experiences of individuals like Sam Berns, the film's central figure.^[16]^[18]

Sam Berns

Sam Berns was born on October 23, 1996, in Providence, Rhode Island.^[20] At 22 months old, he was diagnosed with progeria, a rare genetic disorder that causes accelerated aging.^[21] 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.^[22] Despite the physical challenges of progeria, which limited his mobility and stamina, Berns maintained an optimistic outlook and pursued his interests with determination.^[23] He was a junior at Foxborough High School in Foxborough, Massachusetts, where he earned highest honors and served as percussion section leader in the marching band, adapting by playing from a custom wagon pulled by friends.^[24] Berns cherished close friendships, often crediting them as essential to his happiness, and enjoyed hobbies such as watching the animated series Family Guy.^[25] 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.^[14] Berns passed away on January 10, 2014, at his home in Foxborough, Massachusetts, at the age of 17, due to complications from progeria.^[21] His death occurred shortly after the HBO documentary Life According to Sam, which featured his story, aired in October 2013.^[22]

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 Progeria Syndrome at 22 months of age.^[26] 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.^[26] As the only nonprofit organization 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.^[8] In its early years, PRF achieved several milestones that accelerated Progeria research.^[26] In November 2001, PRF co-hosted the first-ever international workshop on Progeria with the National Institutes of Health (NIH) in Bethesda, Maryland, convening 46 scientists from diverse fields to identify research priorities and foster global collaboration.^[27] 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 Progeria, enabling the development of a diagnostic test.^[28] Headquartered in Peabody, Massachusetts, PRF evolved into a centralized hub for Progeria resources, expanding to maintain the PRF International Patient Registry under Dr. Gordon's leadership to track cases globally and facilitate clinical data collection.^[29] 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.^[30]

Treatment Developments

Early research efforts funded by the Progeria Research Foundation (PRF) culminated in the launch of the first clinical trial for lonafarnib, a farnesyltransferase inhibitor, in 2007. This trial targeted the farnesylation process essential for the function of progerin, the toxic protein produced due to a point mutation in the LMNA gene. The study enrolled 25 children with Hutchinson-Gilford progeria syndrome (HGPS) from around the world, including Sam Berns, who participated starting at age 11. By 2012, Phase II results demonstrated that lonafarnib treatment led to improvements in vascular stiffness, bone mineral density, and hearing, while also slowing the rate of weight gain—a key indicator of reduced aging progression compared to untreated peers.^[31]^[12]^[23] 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 trial 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 institutional review board oversight, the absence of placebo controls in later analyses stemmed from moral imperatives to provide active drug to all eligible children.^[32]^[12]^[33] 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.^[34] 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.^[35] 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.^[36]^[37]^[38]

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.^[39] The Fines, who had previously won Emmy Awards for feature-length works like War/Dance,^[40] brought their expertise in intimate, character-driven storytelling to the project.^[41] The concept originated from the Fines' encounter with Sam Berns and his family, whom they met at a Chili's restaurant near Foxborough, Massachusetts, during initial outreach. Inspired by Sam's resilient outlook on life despite his progeria diagnosis and the Berns family's dedication to advancing research 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 pre-production phase emphasized building trust and conducting preliminary research into progeria's rarity—affecting fewer than 250 children worldwide at the time—and the PRF's ongoing clinical initiatives.^[41] Funding and production support came from HBO Documentary Films, 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 clinical trial 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 progeria syndrome. This partnership shaped the documentary's structure, prioritizing the intersection of personal narrative and medical breakthroughs during pre-production.^[41]

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 cinéma vérité style to immerse viewers in unscripted moments, such as Berns's practices as percussion section leader in the Foxborough High School marching band and candid family discussions about living with progeria. 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 verité footage with explanatory segments on the syndrome. In post-production, 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 editing process involved structuring complex layers—scientific explanations, personal milestones, and hospital routines—into a cohesive narrative, drawing on visual inspirations to elevate ordinary moments into cinematic ones. An original score composed by Keegan DeWitt complemented the storytelling, using subtle, uplifting motifs to reinforce the film's message of purposeful living.^[42]^[24]^[43]

Release

Premiere and Broadcast

Life According to Sam had its world premiere at the Sundance Film Festival 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.^[44] Directed by Sean Fine and Andrea Nix Fine, it introduced audiences to Sam Berns and the efforts of his parents to combat progeria through research and advocacy.^[15] 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.^[45] These early showings helped build momentum for the film's wider release and heightened public interest in progeria research.^[1] The broadcast premiere aired on HBO on October 21, 2013, at 9:00 p.m. ET.^[46] 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.^[47] 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.^[1]

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.^[48]^[49] The DVD edition includes bonus features such as Sam's TEDx talk "My Philosophy for a Happy Life" and updates from the Progeria Research Foundation (PRF) on ongoing research efforts.^[50] The documentary became available for streaming on HBO'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.^[5]^[3] It has aired in reruns on HBO cable channels and is offered internationally through HBO's global broadcasters and festival circuits, including screenings at events beyond its Sundance debut.^[10]^[51] 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.^[6] 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.^[52]^[53]

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 Rotten Tomatoes based on eight reviews.^[5] Critics praised the documentary for its emotional depth and non-exploitative portrayal of Sam Berns and his family, avoiding sentimentality while highlighting their resilience and advocacy efforts.^[4] 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 progeria.^[10] The Hollywood Reporter commended directors Sean Fine and Andrea Nix Fine for their compassionate approach, noting the film's poignant yet unsentimental depiction of Sam's life.^[15] The documentary's artistic and journalistic excellence was recognized with prestigious awards, including the 2013 Peabody Award for excellence in electronic media.^[4] It also won a 2014 Primetime Emmy Award for Exceptional Merit in Documentary Filmmaking.^[54]

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."^[1]^[55] This emotional impact prompted immediate actions from viewers, including heightened support for progeria research. At the New York premiere on October 8, 2013, Robert Kraft 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 progeria and PRF's mission, translating into increased viewer engagement and contributions that bolstered the foundation's efforts.^[55]^[1] 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.^[1]^[14]^[56]

Legacy

Awareness and Advocacy

The documentary Life According to Sam significantly elevated public awareness of progeria, a rare genetic disorder causing premature aging in children, by showcasing the daily life and optimism of its subject, Sam Berns, and the efforts of the Progeria Research Foundation (PRF). Premiering at the Sundance Film Festival in January 2013 and airing on HBO 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.^[1]^[57] PRF leveraged the film's momentum for advocacy campaigns, including the hashtag initiatives #LiveLikeSam and #SamBerns, which encouraged viewers to embrace positivity and support rare disease research, amplifying the foundation's mission to fund clinical trials and family support programs.^[1] The film's media exposure extended to major outlets such as The New York Times, The Boston Globe, ABC News, and National Geographic, where it was profiled for humanizing the challenges of living with progeria and highlighting the need for greater visibility for ultra-rare diseases.^[23]^[22] 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 Robert Kraft announced a $500,000 matching gift challenge to expand PRF's clinical trial efforts, directly attributing the commitment to the documentary's emotional impact.^[55] The film also contributed to heightened advocacy for orphan drug 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 Congress to strengthen incentives under the Orphan Drug Act for treating the 7,000 known rare diseases affecting 30 million Americans.^[58] Its global reach was furthered through international HBO distributions and translations, fostering worldwide solidarity and encouraging similar advocacy in Europe and beyond, where progeria awareness had previously been limited.^[1]^[59] 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 rare disease awareness programs.^[60] It inspired academic and journalistic works exploring life with progeria, 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.^[61] Additionally, articles in prestigious journals such as The Lancet referenced the documentary to discuss progeria's clinical and social implications, while PRF's educational guide for classrooms drew on the film to teach about rare diseases, ensuring its role in ongoing medical conferences and advocacy training.60472-4/fulltext)^[6]

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 2020, the U.S. Food and Drug Administration (FDA) approved lonafarnib, marketed as Zokinvy, as the first treatment for HGPS and processing-deficient progeroid laminopathies in patients aged 12 months and older.^[62] This farnesyltransferase inhibitor, developed through Progeria Research Foundation (PRF)-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.^[63] Additionally, PRF-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.^[64] 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 point mutation in the LMNA gene leading to toxic progerin accumulation. As of 2025, CRISPR-based therapies remain in preclinical stages, with studies demonstrating efficacy in mouse models by correcting the mutation and extending lifespan by over 100%.^[65] For instance, CRISPR-Cas9 and Cas13 variants have shown promise in reducing progerin production and reversing vascular phenotypes in cellular and animal models.^[66] 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.^[67] Complementing this, PRF's ongoing international clinical studies, including the 2025 Progerinin trial combining antisense oligonucleotides with lonafarnib, aim to further enhance cardiovascular and systemic outcomes in global cohorts.^[68] Sam Berns' story, amplified by the documentary, has been credited with accelerating funding and research infrastructure for HGPS. The film's impact prompted immediate pledges, such as a $500,000 matching gift from New England Patriots owner Robert Kraft to expand PRF clinical trials.^[55] 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.^[69]

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Jan 30, 2014 · ... treatment. A prospective single-arm clinical trial was initiated in 2007 with a cohort of 26 HGPS patients between 3 and 16 years of age.
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Search Orphan Drug Designations and Approvals - FDA
1, Generic Name: lonafarnib. Trade Name: ZOKINVY. Marketing Approval Date: 11/20/2020. Approved Labeled Indication: in patients 12 months of age and older ...Missing: fast track 2012
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Eiger Announces Expanded License Agreement with Merck for ...
May 16, 2018 · Merck previously provided lonafarnib free of charge for clinical studies supported by PRF in Progeria. Following the transfer of manufacturing ...
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Oscar-Bound: 'Inocente' Directors Sean and Andrea Fine
Andrea Nix Fine: We had to get married because when we were both on filming ... We just had another film called Life According to Sam that premiered at ...Missing: became | Show results with:became
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Sean Fine and Andrea Nix Fine Tackle Progeria in LIFE ...
Oct 17, 2013 · Sean Fine & Andrea Nix Fine Tackle Progeria With “Life According to Sam” The married filmmakers contemplate time with a film about the premature-aging disease.Missing: became | Show results with:became
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HBO documentary tells about Foxboro teen's 'Life' with progeria
Oct 21, 2013 · “Life According to Sam,” a 90-minute documentary by Oscar-winning ... The Fines follow Gordon's first drug trial at Boston Children's Hospital and ...
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Life according to Sam | WorldCat.org
... An official selection of the Sundance Film Festival, Life According to Sam ... Credits: Composer, Keegan DeWitt ; associate producer, Anne Marler ; senior ...Missing: score | Show results with:score
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https://www.imdb.com/title/tt0912599/awards/
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Fine, Sean | African Film Festival, Inc.
The Fines HBO documentary feature, Life According to Sam, chronicles a ... Full Frame Film Festival's Audience Award; The Haskell Wexler Award for ...
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Life According to Sam Airing on HBO October 21st - Global Genes
Oct 18, 2013 · On Monday, October 21, 9:00 pm ET, HBO will debut LIFE ACCORDING TO SAM, the story of Sam Berns, a young boy with an extremely rare and ...
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The New York Premiere Of HBO's "Life According To Sam"
Oct 9, 2013 · Dr. Scott Berns and Sam Berns attend The New York Premiere Of HBO's "Life According To Sam" at HBO Theater on October 8, 2013 in New York City.
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Life According to Sam : Andrea Nix, Sean Fine - Amazon.com
30-day returnsLife According to Sam explores the remarkable world of Sam Berns and the relentless pursuit of a treatment and cure by his parents (both doctors) to save their ...
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Life According to Sam Wins Emmy, Buy & Share the DVD
May 15, 2014 · Life According to Sam won a 2014 Creative Arts Emmy for “Exceptional Merit in Documentary Filmmaking”.Missing: conference | Show results with:conference
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Progeria Research Foundation - Facebook
Apr 2, 2014 · BREAKING NEWS! Life According to Sam DVD Released! We are pleased to announce that as of today, HBO's Peabody Award Winning documentary Life ...<|control11|><|separator|>
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Journey to the Academy Awards: An Investigation of Oscar ...
Feb 23, 2016 · DISTRIBUTION: Film festivals and online streaming platforms ... Life According to Sam, Fine Films; Dirs.: Sean Fine, Andrea Nix Fine ...
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Life According to Sam Videos - YouTube
Learn why the Emmy award-winning HBO documentary, Life According to Sam, has been praised as an unforgettable, inspiring film about the power of hope, love and ...
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"Life According to Sam" questions? Sam, Leslie and Scott ... - YouTube
Oct 21, 2013 · Thank you for watching "Life According to Sam" on HBO! https://www.progeriaresearch.org/life-according-to-sam ... The Progeria Research Foundation.Missing: clips | Show results with:clips
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Exceptional Merit In Documentary Filmmaking 2014 - Nominees ...
Music Composition For A Series (Original Dramatic Score) · Music Direction ... Life According To Sam. HBO. Sheila Nevins. Executive Producer. Nancy Abraham.
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Powerful HBO Documentary Moves New England Patriots Owner To ...
Oct 10, 2013 · Directed by Academy Award-winning filmmakers Sean Fine and Andrea Nix Fine, LIFE ACCORDING TO SAM will debut on Monday, October 21 on HBO at 9 ...
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Progeria: From the unknown to the first FDA-approved treatment
Feb 25, 2021 · Sam shared what life is like with progeria in the HBO documentary “Life According to Sam.” He died of complications of the disease at the age of ...
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The Hill publishes NORD op-ed: Congress must act now to help 15 ...
Sep 15, 2016 · ... Life According to Sam.” We spend every day at the National ... In 1983, Congress passed the Orphan Drug Act to incentivize therapeutic development ...
[54]
The Progeria Research Foundation: its remarkable journey from ...
Oct 30, 2014 · The award-winning 2013 HBO film Life According to Sam has also brought awareness to a new level. PRF eliminates barriers to communication ...Missing: documentary synopsis summary
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AFI Docs Film Festival: 2013 Film Line-Up - ABC News
The documentary, "Life According to Sam," tells their story. quicklist: 18category: AFI Docs Film Festival: June 19-23, 2013title: "Lost for Life"url: media: ...
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[PDF] Extraordinary Forms of Aging - Life Narratives of Centenarians and ...
... questions of ethics such as, how to deal with a minor who has ... trial, again, raise questions of age, agency, and disease: Is Life According to Sam truly.
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[PDF] Zokinvy (lonafarnib) Approval Letter - accessdata.fda.gov
Nov 20, 2020 · This new drug application provides for the use of Zokinvy in patients 12 months of age and older with a body surface area of 0.39 m2 and ...
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[PDF] 213969Orig1s000 - accessdata.fda.gov
Nov 20, 2020 · Orphan drug designation was granted for lonafarnib for the treatment of HGPS and PL on April ... lonafarnib in the treatment of Progeria, Expert ...Missing: track | Show results with:track
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Association of Lonafarnib vs No Treatment With Mortality Rate in ...
Apr 24, 2018 · Treatment trial 1 was initiated in 2007 and completed in 2010.
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Gene Editing: PRF I The Progeria Research Foundation
Aug 8, 2025 · On August 11, 2025, this top-tier publication featured an in-depth article detailing PRF's history, accomplishments, and present focus on ...Missing: preclinical | Show results with:preclinical
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A therapeutic avenue for Hutchinson-Gilford progeria syndrome
Sep 3, 2025 · CRISPR-Cas9 gene editing presents a potential strategy for treating genetic diseases. However, the efficacy of this technology is limited ...
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How an Ultra-Rare Disease Accelerates Aging - The New Yorker
Aug 11, 2025 · After Sam's diagnosis, Gordon withdrew from her residency and began to study progeria full time. She and Berns started a nonprofit, the Progeria ...
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Progerinin Clinical Trial I The Progeria Research Foundation
Jun 29, 2025 · New clinical trial with the drug Progerinin is officially underway. PRF is thrilled to announce that the first Progerinin clinical trial patient ...
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Meet the Kids | The Progeria Research Foundation
Below, get a small glimpse into the lives of some of the children featured in the HBO Documentary Life According to Sam, and many more from around the world!Missing: synopsis summary