Sammy Basso 1995 — Schio Italy… Sammy Basso was not only a survivor of Progeria, but also an incredible voice and researcher in the space. Renowned for his courageous spirit and drive to improve the lives of others, he held the record as the longest-living person with Progeria and lived until 28 years old – longer than its typical life expectancy.
Table of Contents
Profile Summary
Full Name | Sammy Basso |
Date of Birth | 1995 |
Place of Birth | Schio, Italy |
Diagnosis | Hutchinson-Gilford Progeria Syndrome (HGPS) |
Age at Diagnosis | 2 years old |
Known For | Longest-living survivor of Progeria, Advocate, Researcher |
Co-founder | Italian Progeria Association (2005) |
Education | Degrees in Natural Sciences and Molecular Biology from Padua University |
Research Focus | Genetic editing to treat Progeria, Progerin protein research |
Documentary | Sammy’s Journey (National Geographic) |
Awards | S.A.M. Award (2024) from The Progeria Research Foundation |
Notable Achievements | Participant in clinical trials for lonafarnib, raising global awareness for Progeria |
Date of Passing | October 5, 2024 |
Age at Passing | 28 years old |
Legacy | Advocate for Progeria, scientific contributions, symbol of resilience |
Early Life and Advocacy
Sammy Basso was diagnosed with Hutchinson-Gilford Progeria Syndrome (HGPS) at age two and soon after, he became a symbol of hope for other children who have the extremely rare genetic disease. He and his family created the Italian Progeria Foundation when he was just ten years old. The organization was founded to raise awareness, support families, and fund research on this mysterious disease. Along with his positive spirit and courage, Sammy’s public struggle brought new awareness to Progeria.
This advocacy earned him global recognition when he was featured in the National Geographic documentary, Sammy’s Journey. This movie tracked his journey[7] on Route 66, demonstrating to the nation that in spite of whatever it was, which Sammy completely welcomes life. It was a documentary that not made us understand his pain but helped create an awareness about Progeria around the world.
Educational and Scientific Contributions
In addition to his activism, Sammy Basso has also been able to accomplish a whole lot more in the field of academia and scientific research. For one thing, he was not going to let Progeria dictate his future. Sammy studied for a degree in Natural Sciences, majoring in Molecular Biology at Padua University. The Cambridge research centered on genetic editing strategies to help in treating Progeria, notably by reducing the levels of the lethal protein progerin that is thought to be the primary cause of accelerated aging in individuals with the disease.
Sammy was not just a student; he was an engaged partner in the research enterprise with leading scientists. He was a part of clinical trials for lonafarnib, the first ever FDA treatment for Progeria. This treatment is helping many who have the disease by slowing its progression. This participation of Sammy in these trials and his ongoing partnership with researchers has a critical person played at Progeria fight bulking up the scientific community.
A Life Lived Fully
His personal life was just as colorful and action-packed as his life in public and industry. He was fun-loving and full of positivity. In it, he told the world that “Progeria is a small part of my life because it only affects the body. True to form that had always been the way my father saw things, life was about relationships and experiences not half measures of physical condition.
Sammy was well traveled and mingled with celebrities his entire life, not to mention an audience with the Pope. Despite of the physical deficit due to Progeria, Sammy touched every life he encountered with his boundless joy and a drive for impact. He was a living testimony of the fact that he was not defined by his condition, and remained resolute to live life as it were.
Legacy and Passing
Sammy Basso died on October 5, 2024 at the tender age of 28 — a milestone many with Progeria don’t ever reach. His passing was mourned with sorrow, especially in the Progeria world and among those who were touched by his inspiration. The Italian Progeria Association, which he helped set up, said: ‘our light, our guide has gone out. His was a life that touched many, few matched his diverse experience, causes he championed, and scientific discipline.
But his legacy is one of endurance, perseverance and springs eternal. His efforts in both awareness raising and scientific research led to enhancements that will have ongoing benefits for future generations of children living with Progeria. Even in the midst of incredibly difficult times, his optimistic way to approach life is something that I think about almost on a daily basis and look up to him as such an inspiration, for so many people.
In April 2024, Sammy was awarded The S.A.M. or Science And Medicine Award from The Progeria Research Foundation for his tremendous work in science and advocacy. More than ever, we are inspired to advance his work in the fight against Progeria and remain committed to preventing this terrible disease in our children’s children.
Conclusion
The journey of Sammy Basso was truly extraordinary. Living longer than any person with Progeria, not just surviving but living a life that is significant in world science, and benefiting from genetic disorder modesty. His legacy will live on in his advocacy, education, and radiant personality, all which he leaves behind to continue the work that he has begun. The legacy of Sammy is a reminder that within it all, light can be shone into the darkness and we each have the ability to live fully and make an impact on others.
Social Accounts
FAQs-
Who is the most famous person with progeria?
The most famous person with progeria is Sammy Basso, who was known as the longest-living survivor of the condition, passing away at age 28 in October 2024. He became a prominent advocate for awareness and research on Progeria and was featured in the National Geographic documentary “Sammy’s Journey” 124. Another notable figure is Sam Berns, who was the subject of the HBO documentary Life According to Sam before his death at age 17 in 2014.
Was Sam Berns born with progeria?
The most famous person with progeria is Sammy Basso, known for his advocacy and as the longest-living survivor of the condition. Another notable figure is Sam Berns, featured in the documentary Life According to Sam.
Who is the famous kid with progeria?
The most famous person with progeria is Sammy Basso, known for his advocacy and as the longest-living survivor of the condition. Another notable figure is Sam Berns, featured in the documentary Life According to Sam.
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