Bob Saget was best known for his comedy and acting, but he also worked extensively beyond these areas.
Among her other projects was activism, particularly her search for a cure for scleroderma, an autoimmune disease that ultimately claimed the life of her older sister, Gay.
According to the Mayo Clinic, scleroderma “is a group of rare diseases that involve hardening and tightening of the skin and connective tissues.”
Saget, who was found dead Sunday at age 65 in Florida, served on the board of directors of the Scleroderma Research Foundation (SRF), first joining the organization in 2003, according to the Scleroderma Research Foundation’s website. foundation.
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“Bob’s openness and generosity has brought many people to SRF who otherwise would never have heard of scleroderma,” the statement read. “Our community often faces difficult losses, and Bob was uniquely determined to bring comfort and strength to all of us and to the families most affected by the disease. He has always been the ‘big shoulder’ on which we can all stand. to lean on.”
Saget’s sister died of the disease in 1994 at the age of 47 after only three years of battling the disease. In a 2011 interview with Ability magazine, Saget said her sister was “repeatedly misdiagnosed” before doctors found the good condition she was suffering from.
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“Unfortunately, rheumatologists in many places don’t have a lot of scleroderma patients in their labs, and no one knew what to do with them,” he said at the time. “I wish I had known then what I know now.”
In fact, Gay’s battle with scleroderma was the basis of “For Hope”, a 1996 TV movie directed by Saget.
However, her advocacy against scleroderma began even before her sister fell ill, as she was asked to report for sickness benefit before her diagnosis.
“No one knew about the disease at the time. Rosie O’Donnell, Ellen DeGeneres and I were all involved in the delivery, but that was 25 years ago, and neither of us were had real television life to speak of, “he recalled during the aptitude interview. “Sharon Monsky, who founded the Scleroderma Research Foundation, organized this benefit.”
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Among his work to find a cure for the disease was lobbying in Washington, DC, he shared.
“We really did some amazing things. My part of the effort was organizing perks that raise awareness and make a lot of money,” he said. Saget counted Dana Carvey and the late Robin Williams among the celebrities who participated.
Saget’s commitment to activism came after a life full of family tragedies.
“My mom and dad lost four children. All I saw was death,” he told Ability.
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In addition to his sister Gay, Saget’s family lost two children born before the actor, one of whom was given the first name Bob.
Then in 1985, years before Gay’s death, Saget’s other sister, Andrea, died of a brain aneurysm.
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“So please come back and see me about the brain aneurysm problem!” He joked.