Sammy Basso, known as the longest-living survivor of the extremely rare genetic “aging” disease progeria, recently died at the age of 28, according to a social media post from the Italian Progeria Association that was founded by Basso and his parents.
Progeria, also called Hutchinson-Gilford progeria syndrome, is caused by a tiny genetic mutation that leads to rapid aging in children. According to the Cleveland Clinic, the condition is always fatal and death most often occurs as a result of a heart attack or stroke.
Basso’s biography on the Italian Progeria Association’s website says he was born in the Italian town of Schio and was diagnosed with the condition at two years old.
He often made television appearances to talk about the disease and the work of the association, even staring in a National Geographic documentary. The film titled “Sammy’s Journey” followed Basso, his parents and his best friend, Riccardo, as they traveled along Route 66 in the U.S.
Basso also served as an international ambassador for The Progeria Research Foundation and graduated from the University of Padua in Italy where he studied more about his own disease.
The following statement was provided to Scripps News from The Progeria Research Foundation Executive Director Audrey Gordon: "All of us at The Progeria Research Foundation are devastated by Sammy Basso's passing. He has been a dear friend and inspiration since we met over 2 decades ago. Sammy was among the first to participate in PRF’s clinical trials, and he went on to become a scientist himself so that he could contribute to finding the cure for Progeria as a core member of PRF's gene editing team. He was known and adored throughout the world as a spokesperson for PRF and the Progeria community, and we join millions of others who will miss him deeply. We will treasure memories of Sammy’s extraordinary zest for life, optimism, kindness and brilliance as we do what he would want us to: continue our fight for the cure."
According to the Cleveland Clinic, the average lifespan of an individual with progeria is 14.5 years, although some adults will live into their early 20s. A drug called lonafarnib has been shown to slow down the progression of the disease.
