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Sammy Basso, an advocate for research into progeria, an ultrarare fatal disease that causes rapid aging in children, who was known for living with gusto and humor with the condition as he faced the certainty of premature death, died on Oct. 5 near his home in Tezze sul Brenta, in the Veneto region of northern Italy. He was 28.
Dr. Leslie B. Gordon, medical director of the Progeria Research Foundation, for which Mr. Basso served as global ambassador, said the cause was complications of the disease. Mr. Basso was the oldest known person living with classic progeria.
Mr. Basso, who lived with his parents, was diagnosed with progeria at age 2.
He was one of only about 150 people worldwide identified with the condition. He traveled internationally, most recently to China, to raise awareness; gave TED Talks; and participated with scientists from Harvard and the National Institutes of Health in a research group that is seeking a cure.
“You couldn’t watch a presentation by Sammy without being captivated by his courage, his spunk, his smarts and his sense of humor,” Dr. Francis S. Collins, a former N.I.H. director who has long researched progeria, said in an email.
Progeria, also known as Hutchinson-Gilford progeria syndrome, causes children to undergo rapidly accelerated aging. Its effects include baldness, wrinkled skin, hardening of the arteries and a wizened stature. Mr. Basso was about 4 feet 5 inches tall and weighed about 44 pounds.
Individuals with the condition, whose average life expectancy is 14.5 years, do not experience senility. Profiled in The New York Times in 2022, Mr. Basso joked that mental clarity in the face of certain premature death was either a blessing “or a damnation.”
The article pointed out that Mr. Basso, who founded the Italian Progeria Association Sammy Basso, had become “one of Italy’s most recognizable advocates for science and human dignity, regardless of age.” Pope Francis called him by phone while he was in high school, and President Sergio Mattarella of Italy awarded him a knighthood in 2018.
Mr. Basso inspired Sammy’s Runners, a group of friends who ran marathons to raise awareness of progeria while pushing him in a wheeled chariot.
He was also a bit of a prankster. He once posed outside a U.F.O. museum in Roswell, N.M., in green “alien” eyeglasses, which accentuated his egg-shaped head, to make tourists think he was a real visitor from outer space.
“He made everyone around him feel comfortable with him and with progeria,” Dr. Gordon said. “All he had to do was say two words and you’d be smiling and laughing.”
Sammy Basso was born on Dec. 1, 1995, in Schio, Italy, to Amerigo Basso, a factory worker, and Laura Lucchin, who helped run his progeria association. His parents are his only immediate survivors.
At age 12, Sammy participated in the first clinical trial, at Boston Children’s Hospital, of a drug to slow progeria’s progression.
Dr. Collins credited that medication, lonafarnib, which the Food and Drug Administration subsequently approved, with Mr. Basso’s relative longevity, along with the fact that he “took really good care of himself.”
He graduated from the University of Padua with a degree in natural sciences in 2018, and three years later he earned a master’s in molecular biology from the same university.
Mr. Basso was a patient, a research subject and a researcher of his condition.
“The fact that the science of progeria has advanced so much is in part due to Basso himself,” the medical news site Stat wrote after his death.
The latest frontier of progeria research is a gene-editing technique developed by Dr. Collins, Dr. David Liu of Harvard and others. It would repair a mutated gene that causes progeria and reverse its premature aging. Scientists have shown the technology to work in mice.
The U.S.-based Progeria Research Foundation is working toward F.D.A. approval for a human trial and hopes to raise an estimated $30 million to make a drug privately, since ultrarare diseases do not interest commercial drug companies.
Progeria affects only about one in 20 million people. At the same time, there are some 7,000 genetic diseases with known mutations, and 85 percent are also ultrarare, affecting fewer than one in a million individuals. It is hoped that a progeria breakthrough could help point the way to cures for other diseases.
The researchers, who include Dr. Collins and Dr. Gordon, hold a video call every Monday. Mr. Basso would join them from Italy. He kept the group’s minutes and participated in scientific deliberations.
He once told The Times that he hoped his visibility would encourage others with progeria to seek treatment and avoid despair.
“The thing I would like them to learn by my experience is that their life is important,” he said. “They can be helpful for the world.”
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