Fact-checked by Grok 2 weeks ago

Sam Berns

Sampson Gordon Berns (October 23, 1996 – January 10, 2014) was an American teenager from , who lived with Hutchinson–Gilford syndrome, a rare that causes children to age rapidly and typically leads to death from cardiovascular complications around age 13. Diagnosed at 22 months old, Berns outlived the average lifespan for the condition, reaching 17 years through participation in groundbreaking clinical trials for the drug , which his parents helped pioneer. Born in , to pediatricians Leslie Gordon and Scott Berns, his prompted his parents to co-found the Progeria Research Foundation in 1999, which has since advanced understanding of the disease's genetic cause—a in the LMNA gene producing abnormal protein—and supported research affecting approximately 153 identified children with the syndrome worldwide as of 2025. Despite physical challenges like , , and joint stiffness, Berns led an active life: he earned status, played snare drum in his high school , attended , built elaborate models, and aspired to study engineering at . Berns became a global advocate for progeria awareness, starring in the 2013 HBO documentary Life According to Sam, which chronicled his philosophy of focusing on happiness amid limitations, and delivering a viral TEDxMidAtlantic talk in 2013 where he shared three rules for living a happy life: having a front seat to your own life, having a best friend when you need one, and always staying positive. His efforts helped fund research leading to the FDA's 2020 approval of lonafarnib as the first treatment for progeria, extending life expectancy to an average of about 18.7 years and reducing disease progression. Berns died in Boston from progeria-related complications, leaving a legacy of inspiration that continues to drive advocacy and scientific progress in rare disease research.

Early Life and Diagnosis

Birth and Family Background

Sam Berns was born on October 23, 1996, in . He was the only child of Scott Berns, a board-certified pediatrician and pediatric , and Leslie Gordon, a pediatrician specializing in and . The family provided a nurturing environment rooted in medical knowledge and care from the outset. Berns grew up in , where his parents fostered a close-knit household focused on his well-being and development. The medical expertise of his parents created a supportive family dynamic, equipping them to address early health concerns with informed attention and resources, which shaped their responsive approach to family life.

Diagnosis of Progeria

Sam Berns exhibited initial symptoms of Hutchinson-Gilford syndrome (HGPS) around 9 months of age, including dramatically slowed growth, delayed teething, and subsequent , which signaled and early signs of rapid aging such as wrinkled skin and overall growth delays. These observations were particularly concerning to his parents, Leslie Gordon and Scott Berns, both pediatricians, who recognized the traits of this rare condition through their medical background and a suggestion from a colleague. The diagnostic process began with clinical evaluations, including X-rays and consultations with specialists, culminating in confirmation of HGPS at approximately 22 months old in the summer of 1998 by experts such as W. Ted Brown at the New York State Institute for Basic Research in Developmental Disabilities. Although the initial was clinical, subsequent in 2003 identified the causative in the LMNA gene (c.1824C>T; p.Gly608Gly), a sporadic change that leads to aberrant splicing and production of the toxic protein, driving the premature aging specific to Sam's case. HGPS, affecting roughly 1 in 4 to 8 million live births, manifests as accelerated aging with cardiovascular vulnerabilities, carrying an average of 14 years from heart disease or stroke, though Sam exceeded this by living to 17. In immediate response to the , the Berns chose to publicize Sam's to foster awareness and support for affected children worldwide, while Leslie Gordon paused her medical residency to focus on research and co-founded the Research Foundation in 1999 with Scott Berns and her sister Audrey Gordon to secure funding and drive scientific advancements.

Education and Personal Interests

Schooling and Academic Life

Sam Berns attended Foxborough High School in , where he was a junior at the time of his death in 2014. Despite the physical challenges posed by , Berns maintained strong academic performance, achieving highest honors and earning selection to the . He actively participated in school activities, particularly as a percussion section leader in the high school , where he played a specially designed adapted with a lighter harness to accommodate his mobility limitations. Berns relied on a for mobility at and benefited from supportive peers who integrated him fully into and social interactions, fostering his outgoing personality through music-related extracurriculars.

Hobbies and Daily Challenges

Sam Berns pursued several passions that brought joy and structure to his life despite the constraints of . He was an avid , serving as the percussion section leader in the Foxborough High School marching and concert bands, where he played the and enjoyed instruments such as bongos, timpani, timbales, and cowbell. Adaptations, including a custom lightweight harness, enabled his participation in activities. Additionally, Berns was a dedicated sports enthusiast, particularly as a fan of the and , often attending games and forming connections with players from both teams. He also aspired to study or at university, reflecting his intellectual curiosity. Berns also enjoyed building elaborate models, showcasing his creativity and problem-solving skills. Living with progeria presented Berns with significant daily challenges, including joint stiffness that limited mobility and caused pain in areas like the hips and knees, as well as progressive cardiovascular issues such as , which posed risks of heart attacks or strokes. The condition also resulted in the inability to grow , leading to total alopecia by , and that kept his weight around 50 pounds. These symptoms often necessitated mobility aids; for instance, Berns could not carry the standard 40-pound harness due to his frail build, prompting the creation of a customized, version weighing only 6 pounds, designed with input from his family and an . Berns maintained a positive outlook through a personal philosophy he shared publicly, emphasizing three key principles: focusing on what he could achieve rather than his limitations, surrounding himself with supportive and positive people, and being authentic about his emotions without self-pity. He often stated that despite , he led a fulfilling life because he felt happy, successful in his endeavors, and supported by a loving who encouraged his . To foster this autonomy, his home incorporated modifications common for patients, such as features to accommodate limited mobility and joint issues. This approach enabled Berns to engage actively in his interests and routines, embodying resilience in the face of ongoing physical hurdles.

Advocacy Work

Role in Progeria Research Foundation

The Progeria Research Foundation (PRF) was established in 1999 by Sam's parents, Dr. Leslie Gordon and Dr. Scott Berns, along with family and friends, shortly after Sam's diagnosis with Hutchinson-Gilford progeria syndrome in 1998. Initially focused on providing a support network for affected families amid limited medical knowledge and resources, the organization quickly evolved into the world's only nonprofit dedicated exclusively to discovering treatments and a cure for progeria. From a young age, Sam served as a prominent face and spokesperson for PRF, beginning engagements at age four to raise awareness and funds. His involvement helped propel the foundation's growth, including participation in events that contributed to raising over $18 million for research by 2014. Under influences like Sam's , PRF launched key initiatives such as the Progeria Patient Registry in the early 2000s, which connects families worldwide, facilitates medical data sharing, and supports clinical care. The registry also enabled family support programs, offering , educational resources, and connections to specialists at no cost. Sam's visibility further advanced PRF's research efforts, notably through sponsorship of clinical trials for , a farnesyltransferase inhibitor targeting 's underlying genetic mutation. These trials, initiated in 2007 with PRF collaboration, led to the drug's FDA approval in November 2020 as the first treatment for , extending by an average of 2.5 years. As PRF expanded, it broadened funding to genetic research on aging-related diseases like heart disease, leveraging 's model to accelerate discoveries in broader , with Sam actively attending scientific workshops and donor events to drive momentum. Building on these efforts, as of 2025, PRF is advancing gene editing therapies aimed at curing and conducting a new for the drug Progerinin.

Public Awareness Campaigns

Sam Berns began his advocacy for awareness at the age of four, shortly after his parents founded the Research Foundation, engaging in public appearances such as school talks and television interviews to educate audiences about the rare condition and challenge associated stigmas. These early efforts highlighted his personal experiences, emphasizing and normalcy despite the disease's effects, and served as an entry point for broader outreach beyond the foundation's internal operations. Throughout his life, Berns participated in key public campaigns, and advocacy trips to Washington, D.C., where he and his family lobbied lawmakers for increased federal funding for research under initiatives like the Children's Health Act of 2000. His involvement helped amplify calls for resources, drawing attention to the need for support and contributing to legislative recognitions of . Berns shared his story through prominent media interviews, appearing on outlets such as ABC Primetime, , , and , where he discussed living with to humanize the condition and encourage empathy. These features, often focusing on his optimistic outlook, destigmatized the disease by portraying it through the lens of everyday challenges and joys rather than solely medical tragedy. His advocacy significantly boosted global awareness of , leading to improved diagnosis rates and expanding the Progeria Research Foundation's reach to over 250 affected families worldwide by connecting isolated cases and fostering community support. This heightened visibility not only accelerated research momentum but also inspired ongoing initiatives.

Honors and Media Recognition

Sports Honors

Sam Berns, a devoted fan of Boston-area sports teams, received notable tributes from the and that highlighted his advocacy for research while celebrating his passion for and . These honors not only recognized his personal enthusiasm for the games but also served as platforms to raise awareness and funds for the Progeria Research Foundation (PRF). On November 9, 2013, the hosted Awareness Night at during their home game against the , inviting Berns as the guest of honor. He participated actively by dropping the ceremonial puck alongside team captain Zdeno Chara and serving as the team's assistant equipment manager for the evening, experiences that aligned closely with his lifelong love of . The event featured special promotions and auctions that raised significant donations for the PRF, advancing research into the rare genetic disorder. Following Berns's death on January 10, 2014, the Bruins paid posthumous tribute to him on January 14, 2014, before their home game against the . The ceremony included a video montage of his life and advocacy work, along with a observed by players and fans, underscoring the team's appreciation for his inspirational spirit and connection to the franchise. The also extended a profound honor to Berns shortly before his passing, naming him honorary captain for their Divisional playoff game against the on January 11, 2014. Owner , who had befriended Berns and previously matched donations up to $500,000 for the PRF during Berns's 17th birthday campaign, personally invited him to lead the team onto the field. Although Berns died the day before the game, the Patriots dedicated their 43-22 victory to his memory with a pre-game , reflecting how his fandom and resilience had inspired the organization.

TED Talk and Documentary

In 2013, Sam Berns delivered a talk titled "My Philosophy for a Happy Life" at the TEDxMidAtlantic event in At age 17, he shared his approach to finding joy despite the physical limitations imposed by , emphasizing three core principles: not dwelling on what he could not do, surrounding himself with supportive people, and maintaining an optimistic outlook. Key quotes from the talk include, "I don’t waste energy feeling bad for myself," and "I have a front-row friend, which is a friend that will sit with you in the front row, the good times and the bad times." The video of the talk, uploaded to in December 2013, has garnered over 54 million views, while cross-platform views exceed 100 million, making it one of the most watched TEDx talks ever. That same year, Berns was the central figure in the HBO documentary Life According to Sam, directed by Sean Fine and Andrea Nix Fine. The film, which followed Berns from age 13, chronicled his daily life, family dynamics, and the ongoing research efforts led by his parents through the Research Foundation (PRF) to develop treatments for the disease. It premiered at the in January 2013 and aired nationally on on October 21, 2013, just days before Berns's 17th birthday. Filmed over several years, the documentary highlighted Berns's humor, resilience, and determination, blending personal stories with the scientific pursuit of a cure. It received critical acclaim, winning a in 2013 and an Emmy Award for Exceptional Merit in Documentary Filmmaking in 2014. Both the TEDx talk and significantly amplified awareness of and support for the PRF. The projects inspired increased donations, including a $500,000 matching challenge from owner in October 2013 to fund clinical trials, ultimately raising substantial funds for research. They also elevated global visibility for the , reaching millions and encouraging broader public engagement with advocacy efforts.

Death and Legacy

Final Days and Passing

In late 2013, Sam Berns' health began to decline significantly due to complications from Hutchinson-Gilford syndrome, particularly cardiovascular issues that are the primary in individuals with the . These complications, including heart disease, intensified, reflecting the progressive nature of , which accelerates aging and leads to widespread organ strain. Despite his worsening condition, Berns remained engaged with his passions in his final days. On January 7, 2014, members of the visited him at home, a gesture honoring his lifelong ; he had expressed a strong desire to attend the team's upcoming playoff game as honorary captain but was too ill to do so. This interaction underscored his enduring spirit amid declining health. Berns passed away peacefully at his home in , on January 10, 2014, at the age of 17 years and 2 months, due to complications from . His family confirmed the news through the Progeria Research Foundation, noting that he died surrounded by loved ones. A funeral service was held on January 14, 2014, at Temple Israel in , attended by hundreds, including owner . Berns' parents, Drs. Scott and Leslie Gordon Berns, issued a statement via the foundation expressing profound grief while affirming his lasting impact: "The entire Progeria Research Foundation community mourns the loss of our friend and fearless advocate, Sam Berns." They described his passing as peaceful, emphasizing the love and support that defined his final moments.

Enduring Impact on Research and Awareness

Sam Berns' advocacy and public profile significantly accelerated research into Hutchinson-Gilford progeria syndrome (HGPS) following his death in 2014, culminating in the U.S. Food and Drug Administration's approval of (marketed as Zokinvy) on November 20, 2020, as the first targeted treatment for the disease. This oral farnesyltransferase addresses the underlying genetic defect by inhibiting the farnesylation of , the abnormal protein causing HGPS, and clinical trials demonstrated it reduced mortality by 60% and extended average survival by 2.5 years in treated children. The Progeria Research Foundation (PRF), co-founded by Berns' parents, credited his story and the ensuing heightened visibility for expediting these trials, which began in 2007 with PRF funding and enrolled 28 participants globally. Building on this milestone, Berns' legacy has propelled ongoing clinical trials aimed at further improving outcomes and exploring applications beyond HGPS, including for processing-deficient progeroid laminopathies and age-related conditions in the general population. A phase I/II trial combining with , an , remains active to assess enhanced efficacy in reducing accumulation and improving cardiovascular health, with final visits ongoing as of 2023. In October 2024, the FDA authorized a Phase 2a , supported by PRF, for Progerinin, a small-molecule of progerin-lamin A binding, with implications for broader aging research given progerin's role in normal . Berns' efforts to raise awareness have had a sustained effect, with his 2013 TEDxMidAtlantic talk, "My Philosophy for a Happy Life," amassing over 100 million views across TED and TEDx platforms by October 2023, continuing to educate and inspire global audiences on living meaningfully with rare diseases. The accompanying HBO documentary, Life According to Sam (2013), which chronicled his life and advocacy, remains a key resource for public education, fostering empathy and support for progeria-affected families. PRF honors his influence through initiatives like the annual International Progeria Road Race and legacy-focused events, which sustain momentum for awareness and fundraising. Culturally, Berns' story has permeated literature and media, shaping narratives and advocacy. He is profiled in seminal articles such as National Geographic's 2014 piece on 's genetic underpinnings, which highlighted his role in spotlighting the condition for researchers, and a 2025 feature exploring 's links to aging science. His experiences influenced broader movements, including tributes that cite his optimism as a model for patient empowerment, and inspired global advocates like Italian patient Sammy Basso, who echoed Berns' philosophy in his own campaigns until his passing in 2024. Quantifiable metrics underscore this impact: PRF has funded 85 research grants totaling $9.3 million since its inception, with post-2014 expansions enabling the trials and registry growth to 131 identified children worldwide by 2021, up from fewer than 100 pre-2014 due to enhanced global awareness campaigns like "Find the Children." These efforts have contributed to an estimated 400–450 children now known to live with globally, reflecting improved diagnosis rates through increased physician and parental recognition spurred by Berns' visibility.

References

  1. [1]
    https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(14)60472-4/fulltext
  2. [2]
    Sam Berns, Teen Known For His Fight Against 'Aging Disease,' Dies
    Jan 12, 2014 · Sam Berns, the teen who became nationally known for his fight against a disease that accelerates aging, died on Friday from complications of his disorder.<|control11|><|separator|>
  3. [3]
    Sam Berns 10/23/96 - 01/10/14 - The Progeria Research Foundation
    Jan 10, 2014 · Sam, age 17, was diagnosed at 22 months of age with Progeria. His parents, Drs. Leslie Gordon and Scott Berns, established The Progeria Research ...
  4. [4]
    The Short, Remarkable Life of Sam Berns Turned Spotlight on ...
    Jan 14, 2014 · Sam Berns was one of 28 children who participated in a research trial conducted by the Progeria Research Foundation, which his parents founded.
  5. [5]
    Sam Berns dies at 17; subject of film about genetic condition progeria
    Jan 13, 2014 · Born Oct. 23, 1996, Sam was diagnosed with progeria at 22 months. His parents, physicians Leslie Gordon and Scott Berns, established the ...
  6. [6]
    Scott Berns, MD, MPH, FAAP - Ariadne Labs
    He is a board-certified pediatrician and pediatric emergency physician. Scott also completed a one-year White House Fellowship where he served as a Senior ...
  7. [7]
    Gordon, Leslie - Researchers @ Brown
    Dr. Gordon's research revolves around Progeria, a rare, fatal genetic condition characterized by an appearance of accelerated aging in children.
  8. [8]
    Leslie GORDON | Brown University, Providence | Research profile
    Leslie GORDON, Professor of Pediatrics Research | Cited by 9684 | of Brown University, Providence | Read 105 publications | Contact Leslie GORDON.
  9. [9]
    Community field dedicated in Sam Berns' memory - WCVB
    Jun 12, 2014 · Berns grew up in Foxborough and went to school there, talked football and played the snare drum in the school marching band. "This has always ...
  10. [10]
    Beloved teen Sam Berns dies at 17 after suffering from rare disease
    Jan 12, 2014 · A student at Foxborough High School – in his and the Patriots' hometown – he joined the marching band, playing a specially designed snare drum.
  11. [11]
    A Mother's Mission | Brown Alumni Magazine
    Jan 7, 2014 · Sam, with parents Leslie Gordon and Scott Berns, turned 17 in October. He is an outstanding student in a public high school and a drummer in ...
  12. [12]
    Love and Science - UNH Magazine
    It's hard to imagine any of this happening had Sam Berns not been born to a couple of medical doctors, and more specifically, to Leslie Gordon, a pediatric ...
  13. [13]
    Our Story - The Progeria Research Foundation
    Our story began when Dr. Leslie Gordon and Dr. Scott Berns found out that their son Sam was diagnosed with Progeria. Thus friends and family came together ...
  14. [14]
    Sam G. Berns - Brezniak Funeral Directors
    Sam Berns was a Junior at Foxboro High School in Foxboro, where he achieved highest honors and was recently selected to be a member of the National Honor ...
  15. [15]
    Sam Berns: My philosophy for a happy life | TED Talk
    Mar 28, 2018 · Born with a rare genetic disorder called progeria, Sam Berns knew he'd be facing more obstacles in life than most. This ... disabled in your ...
  16. [16]
    None
    ### Summary of Sam Berns' Schooling and Related Activities
  17. [17]
    [PDF] EDUCATIONAL DISCUSSION GUIDE LIFE ACCORDING TO SAM
    ... Sam Berns, a remarkable young man excelling as a student, a percussionist in ... He's also living with a rare, fatal genetic condition called Progeria.
  18. [18]
    My Philosophy for a Happy Life by Sam Berns (Transcript)
    Jun 19, 2014 · Full text and summary of Sam Berns' talk titled “My Philosophy for a Happy Life” at TEDxMidAtlantic conference. Listen to the MP3 Audio here.
  19. [19]
    Sam Berns' story moved us all - ESPN - Rick Reilly Go Fish
    Oct 24, 2013 · It has been an unforgettable week in the remarkable life of Sam Berns, the now 17-year- old Patriots fan I wrote about last Thursday.
  20. [20]
    'Life According to Sam': Mom's research may be key to son's survival
    Oct 21, 2013 · When we first meet him, Sam Berns is a fairly happy eighth-grader living outside Boston, interested in Legos and science; he dreams of ...
  21. [21]
    [PDF] The Progeria Handbook
    Children with Progeria die of atherosclerosis (heart disease) or stroke at an average age of 14 years (with a range of about 8-21 years).
  22. [22]
    About PRF | The Progeria Research Foundation
    PRF is a vibrant organization with a deep commitment to finding treatments and the cure for Progeria. We operate in a fast-paced, dynamic environment that ...
  23. [23]
    Meet the Kids | The Progeria Research Foundation
    Sam Berns. Sam passed away on January 10, 2014. He was 17 years old. The film shows Sam at ages 13 – 15, and we are so grateful that this award ...
  24. [24]
    Foxboro teen loses battle with progeria - Boston Herald
    Jan 12, 2014 · The foundation has raised nearly $15 million in the battle for a cure, and Seng said the HBO documentary went a long way in helping the cause. “ ...
  25. [25]
    International registry - The Progeria Research Foundation
    International Progeria Patient Registry. English Registry Form, Arabic Registry Form, Chinese Registry Form, Dutch Registry Form, French Registry Form.
  26. [26]
    [PDF] 20.PRF Programs and Services - The Progeria Research Foundation
    PRF's International Patient Registry has been established to provide services and information to families of children with Progeria, treating physicians, and ...
  27. [27]
    research programs | The Progeria Research Foundatio
    Leslie Gordon and Scott Berns' child Sam was diagnosed with Progeria in 1998, they immediately began to collect as much information as they could find on ...
  28. [28]
    The day has come: FDA approval for first-ever Progeria treatment!
    Nov 20, 2020 · * Children and young adults with Progeria in the U.S. may now access lonafarnib by prescription, instead of through a clinical trial. This ...
  29. [29]
    Racing With Sam - The New York Times
    Jan 30, 2005 · Sam has progeria, which is usually described as a grossly accelerated form of aging that turns children into wizened old men and women before their teens.
  30. [30]
    A Race Against Time | Science | AAAS
    They set up the Progeria Research Foundation (PRF) to lobby for and fund investigations into the condition and to create research resources for scientists, ...
  31. [31]
    Sam Berns, Boy With 'Aging Disease' Progeria, Dies at 17 - ABC News
    Jan 11, 2014 · Last year Sam was the subject of an HBO documentary called "Life According to Sam," in which filmmakers followed his life and his parents' ...
  32. [32]
    Progeria: From the unknown to the first FDA-approved treatment
    Feb 25, 2021 · Sam passed away at the age of 17 in 2014 from complications of progeria, but he left behind a legacy of love, hope and inspiration. “I didn't ...
  33. [33]
    Robert Kraft: 'I loved Sam Berns' - New England Patriots Blog - ESPN
    Jan 11, 2014 · Earlier this week, I had extended an invitation for Sam to be the Patriots' honorary captain for tonight's playoff game.
  34. [34]
    Boston Bruins honor Sam Berns, teen who died of rare genetic ...
    Jan 15, 2014 · The Bruins hosted Progeria Awareness Night back in November. Berns also spent time with the New England Patriots, and was set to be an honorary ...
  35. [35]
    Boston Bruins Honor Sam Berns with Tribute Video | Foxborough ...
    On Nov. 9, the Bruins held Progeria Awareness Night. During the evening, Berns dropped the first puck, served as the assistant equipment manager for the team, ...
  36. [36]
    Bruins will honor Sam Berns and his legacy before home game
    Jan 14, 2014 · On Nov. 9, Berns was the honored guest of the Bruins on “Progeria Awareness Night” at TD Garden. He dropped the first puck and was an assistant ...
  37. [37]
    Statement from Robert Kraft on the passing of Sam Berns
    Earlier this week, I had extended an invitation for Sam to be the Patriots' honorary captain for tonight's playoff game.
  38. [38]
    Tedx talks - The Progeria Research Foundation
    Sam Berns: “My Philosophy for a Happy Life” | TEDxMidAtlantic, October 2013 · Scott Berns: “A Tribute to Sam and Thank you to the TEDx Community” TEDxMidAtlantic ...Missing: details | Show results with:details
  39. [39]
    My philosophy for a happy life
    ### Key Quotes
  40. [40]
    My philosophy for a happy life | Sam Berns | TEDxMidAtlantic
    Dec 13, 2013 · , Sam Berns was a Junior at Foxboro High School in Foxboro, Massachusetts ... I grew up in a cult. It was heaven -- and hell. | Lilia ...
  41. [41]
    Life According to Sam (2013) - IMDb
    Rating 8.1/10 (996) A moving look at a couple's inspiring efforts to save their only son Sam from the rare and fatal premature-aging disease of progeria.
  42. [42]
    LATS | The Progeria Research Foundation
    This 90-minute film about Progeria, the extraordinary Sam Berns, his parents' and PRF's search for a cure, and the family's ability to live life to its fullest.
  43. [43]
    Life According to Sam - The Peabody Awards
    Sam is 13 when the film begins. With the help of his parents and friends, he is coping with Progeria, a rare disease manifested by accelerated aging.
  44. [44]
    Awards | The Progeria Research Foundation
    Life According to Sam won an Emmy for “Exceptional Merit in Documentary Filmmaking”. Congratulations to Sheila Nevins and Nancy Abraham of HBO Documentary ...
  45. [45]
    A Day with Sam - New England Patriots
    Oct 25, 2013 · ... Sam," which tells the incredible story of the Foxborough teen and how his parents, Drs. Leslie Gordon and Scott Berns, work tirelessly to ...
  46. [46]
    Boy with rare disease dies day before he was to be honorary captain ...
    Jan 12, 2014 · Sam Berns and his parents Scott Berns and Leslie Gordon attend the 18th Annual Nantucket Film Fesitval on June 29 in Nantucket, Mass. The family ...<|control11|><|separator|>
  47. [47]
    Patriots lose one of their special fans - The Providence Journal
    Jan 11, 2014 · Sam Berns, 17, was from Foxboro. He suffered from Progeria, a disease that causes premature aging. The Patriots had learned of Berns' situation ...
  48. [48]
    https://www.providencejournal.com/story/sports/nfl/2014/01/11/20140111-patriots-lose-one-of-their-special-fans-ece/35374567007/
  49. [49]
    Funeral Held For Foxborough Teen With Aging Disorder - WBUR
    Jan 14, 2014 · Services for 17-year-old Sam Berns, of Foxborough, were held Tuesday at Temple Israel in Sharon. Among those in attendance was New England Patriots owner ...
  50. [50]
    The World Mourns Sam Berns - Boston Magazine
    Jan 13, 2014 · Sam Berns, the Foxboro High School junior who suffered from Progeria, passed away Friday. Sam Berns was 17 years old.
  51. [51]
    Heroic teen's death draws outpouring of love, support - USA Today
    Jan 12, 2014 · A football team owner, a world-renowned medical researcher and a lot of regular folks are expressing their love and respect for Sam Berns.<|control11|><|separator|>
  52. [52]
    Association of Lonafarnib vs No Treatment With Mortality Rate in ...
    Apr 24, 2018 · Among patients with HGPS, lonafarnib monotherapy compared with no treatment was associated with lower mortality after 2.2 years of follow-up.
  53. [53]
    Study Details | NCT02579044 | Phase I/II Trial of Everolimus in ...
    This is a phase I/II dose-escalation trial of everolimus in combination with lonafarnib in Hutchinson-Gilford Progeria Syndrome (HGPS) and progeroid ...
  54. [54]
    US FDA Authorizes Launch of Clinical Trial to Support New ...
    Oct 2, 2024 · Currently, Zokinvy is the only treatment for Progeria and PL approved by the FDA (in 2020), the European Medicines Agency (EMA, in 2022) and the ...
  55. [55]
    https://www.biospace.com/fda/us-fda-authorizes-launch-of-clinical-trial-to-support-new-treatment-development-for-progeria
  56. [56]
    TEDx | The Progeria Research Foundation
    Oct 15, 2023 · Sam Berns' TEDx talk, 'My Philosophy for a Happy Life,' has now been viewed across TED and TEDx platforms more than 100 million times!<|control11|><|separator|>
  57. [57]
    Clinical trials | The Progeria Research Foundation
    The FTI lonafarnib is now a proven treatment for Progeria.​​ In 2012, the study results were published, demonstrating that every child experienced improvement in ...
  58. [58]
    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 ...
  59. [59]
    Sam Berns - Rare Disease Day 2026
    Sam Berns, the teenager who aged ahead of time, died last week after battling for 17 years with an incredibly rare genetic condition.
  60. [60]
    Sammy Basso I The Progeria Research Foundation
    Oct 9, 2024 · Sammy sadly passed away at the age of 28 on October 5, 2024. Sammy was the oldest known person living with classic Progeria.
  61. [61]
    Quick Facts | The Progeria Research Foundation
    PRF-funded Progeria Clinical Drug Trials: 5; Grants funded: 85, totaling $9.3 million; Cell lines in the PRF Cell & Tissue Bank: 211; Children in PRF's Medical ...
  62. [62]
    Progeria (Hutchinson-Gilford Progeria Syndrome)
    Progeria affects approximately 1 in 18 million people. An estimated 400 to 450 children are currently living with progeria worldwide, of all ethnic backgrounds.