Bob Saget was all about 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 scleroderma, an autoimmune disease.
In an interesting twist, Saget had actually started working with the Scleroderma Research Foundation a few years before Gay’s diagnosis, he said. NIH Medline Plus Magazine in 2019.
“I got a call from someone I didn’t know asking me to host a comedy fundraiser for a disease I knew very little about,” recalls the actor, who died Jan. 9 at the age of 65, after speaking to founder Sharon Monsky. . “I said yes and hosted the event, which featured Ellen DeGeneres, Rosie O’Donnell and others. I had no idea that 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 hardening and tightening of the skin and connective tissues.” More common in women than in men, it often occurs between the ages of 30 and 50, and there is no cure. The severity varies, with some people seeing effects on their skin and others on their blood vessels, internal organs and digestive tract, the Mayo Clinic shares.
Gay, Saget recalls, eventually moved from Philadelphia to Los Angeles to be with his parents after his diagnosis at 44.
“She needed so much help,” he said. “It is incredibly painful to watch a loved one go through an illness like this. It is a very painful illness. My family still suffers from post-traumatic stress disorder. I don’t know how my parents endured. . “
RELATED: Remembering Bob Saget’s Life In Photos
Saget transposed his grief into the 1996 TV movie For hope, a story of a woman with scleroderma (played by Dana Delaney) loosely based on Gay’s story. The article helped raise awareness about the disease, and Saget continued his advocacy by eventually taking a seat on the Board of Trustees of the Scleroderma Research Foundation and hosting the annual Cool Comedy, Hot Cuisine, Fundraiser, mixing the stand-up of the Full house star and his famous friends with meals cooked by great chefs. To date, the event has raised $ 25 million for research and treatment.
Chelsea Lauren / Getty John Stamos and Bob Saget at Cool Comedy, Hot Cuisine 2015
In an Instagram post from May 2021, Saget called it “one of my life’s missions to help find a cure for this disease.”
And to those living with scleroderma, the actor had a message of hope when he spoke 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 come up with even more effective treatments and possibly a cure.”
“I speak and meet a lot of people with the disease,” he added. “My word is not to give up hope because we are making incredible progress.”
