Sammy Basso, the longest-living survivor of progeria, dies at 28

(Gray News) – The longest-living survivor of progeria has died at the age of 28.

In a Facebook post, the Progeria Research Foundation announced that Sammy Basso passed away Saturday.

“Sammy was the embodiment of kindness, warmth, resilience and wisdom, serving the Progeria community with many years of outstanding dedication to scientific progress toward the cure for Progeria,” the organization wrote in a Facebook post. “He will be forever missed.”

Progeria is a rare disease that causes rapid aging in children and adults.

Experts say those diagnosed with progeria often appear normal at birth but grow much more slowly and don’t gain the expected weight. The condition also increases the chances of heart attack and stroke.

Those with progeria often only live to about 14 years of age, although some people can make it well into their 20s.

Basso was born in Italy in 1995 and received his progeria diagnosis at the age of 2, according to the Progeria Research Foundation. When he was just 10 years old, he became an ambassador for the foundation and was the first to join the organization’s clinical trials, which were testing the first-ever treatment for progeria.

Along with being a spokesperson for those with progeria, Basso would study the sciences in college, graduating from Padua University in 2018 with a degree in Natural Sciences. He also delivered a thesis on a genetic editing approach in HGPS mice.

He would graduate with a second degree in Molecular Biology in 2021 when he delivered a thesis on the intersection of Lamin A and Interleukin-6, which is an approach for treating progeria, according to the Progeria Research Foundation.

In an obituary for Basso written by Eric Boodman of STAT, Basso was described as having an incredible sense of humor.

Boodman said Basso knew the rare disease made him look unusual, with a bald head, no eyebrows and looking prematurely aged, but that often used his appearance to aid in his jokes and make people laugh.

“As one of the oldest known survivors of progeria, an ultra-rare disease, his life was utterly unlike other people’s, but he lived it with the conviction that he could connect with anybody, be it the trick-or-treating kids of Frederick, Maryland, the pope, or the masterminds of gene editing,” Boodman wrote.