Remembering Sammy Basso: Advocate for Progeria Research

Remembering Sammy Basso: A Life of Courage and Advocacy

Sammy Basso, a passionate advocate for research into progeria—an exceedingly rare and fatal genetic disorder that accelerates the aging process in children—passed away on October 5 near his home in Tezze sul Brenta, nestled in the picturesque Veneto region of northern Italy. He was just 28 years old. According to Dr. Leslie B. Gordon, the medical director of the Progeria Research Foundation, where Mr. Basso served as a global ambassador, the cause of death was complications related to the disease. Remarkably, Mr. Basso had outlived all other known individuals diagnosed with progeria.

Diagnosed with progeria at the tender age of two, Mr. Basso lived with his devoted parents and was one of only approximately 150 people worldwide identified with this condition. His life was marked by a relentless spirit as he traveled extensively around the globe, including a recent trip to China, to raise awareness about progeria. He delivered inspiring TED Talks and collaborated with esteemed scientists from prestigious institutions like Harvard University and the National Institutes of Health, working diligently within a research group dedicated to finding a cure.

“You couldn’t watch a presentation by Sammy without being captivated by his courage, his spunk, his intelligence, and his wonderful sense of humor,” remarked Dr. Francis S. Collins, a former director of the N.I.H. who has been a long-time researcher in the field of progeria. His words reflect the profound impact that Mr. Basso had on everyone who encountered him.

Progeria, also known as Hutchinson-Gilford progeria syndrome, leads to a rapid aging process in affected children. The physical manifestations of this condition include baldness, severely wrinkled skin, hardening of the arteries, and a notably diminutive stature. At the time of his passing, Mr. Basso stood about 4 feet 5 inches tall and weighed approximately 44 pounds. Despite the challenges posed by progeria, individuals with this condition, whose average life expectancy is around 14.5 years, do not suffer from senility, allowing them to maintain clarity and awareness throughout their lives.

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