How the Tragic Death of His Sister Pushed Bob Saget Into a Life of Charitable Work

Bob Saget was a tireless activist for the Scleroderma Research Foundation, inspired by the death of his sister, Gay

Bob Saget was all about the jokes. But his family life was anything but funny.

In 1985, his sister Andrea died of a brain aneurysm, and in 1994, he lost his other sister, Gay, to the autoimmune disease scleroderma.

In an interesting twist, Saget had actually started work with the Scleroderma Research Foundation a few years prior to Gay's diagnosis, he told NIH Medline Plus Magazine in 2019.

"I got a call from someone I did not know asking me to host a comedy fundraiser for a disease I knew very little about," the actor, who died on Jan. 9 at the age of 65, recalled of speaking to founder Sharon Monsky. "I said yes and hosted the event, which starred Ellen DeGeneres, Rosie O'Donnell and others. Little did I know that just a few years later, my sister would be diagnosed with the disease."

According to the Mayo Clinic, scleroderma is "a group of rare diseases that involve the hardening and tightening of the skin and connective tissues." More prevalent in women than men, it often occurs between the ages of 30 and 50, and there is not a cure. Severity varies, with some people seeing effects in their skin and others, in blood vessels, internal organs and the digestive tract, the Mayo Clinic shares.

Gay, Saget recalled, eventually moved home to Los Angeles from Philadelphia to be with her parents following her diagnosis at 44.

"She needed so much help," he said. "It is incredibly painful to have a loved one experience a condition like this. It is a very painful disease. My family is still having post-traumatic stress disorder. I don't know how my parents endured."

Saget spun his grief into the 1996 TV movie For Hope, a story of a woman with scleroderma (played by Dana Delany) loosely based on Gay's story. The piece helped raise awareness around the disease, and Saget continued his advocacy by eventually taking a seat on the Scleroderma Research Foundation board and hosting the annual Cool Comedy, Hot Cuisine fundraiser, melding standup from the Full House star and his famous friends with meals cooked by top chefs. To date, the event has raised $25 million toward research and treatment.

Actors John Stamos (L) and Bob Saget
John Stamos and Bob Saget. Chelsea Lauren/Getty

In a May 2021 Instagram post, Saget called it "one of my life's missions to help find a cure for this disease." At the time of his death, the Scleroderma Research Foundation remembered him as a "relentless champion" for patients.

To those living with scleroderma, the actor had a message of, well, hope, when speaking to NIH Medline Plus Magazine in 2019.

"There are new drugs specifically for scleroderma that are helping people," he said. "But we have a long way to go to get to even more effective treatments and eventually a cure."

"I speak with and meet a lot of people with the condition," he added. "My word to them is don't give up hope, because we are making incredible progress."

To donate to the Scleroderma Research Foundation in Saget's memory, click here.

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