"My word to them is don't give up hope because we are making incredible progress," the actor said at the time.
Bob Saget, dubbed "America's dad" was so endearing that it was hard not to smile while watching him on TV. But despite his cheerful on-camera persona, his personal life was one marred with loss and grief.
In 1985, he lost his sister, Andrea, to brain aneurysm. Then, in 1994, he lost his other sister, Gay, to the autoimmune disease, scleroderma.
According to the Mayo Clinic, scleroderma is "a group of rare diseases that involve the hardening and tightening of the skin and connective tissues." It is more prevalent in women than men, and it often occurs between the ages of 30 and 50. Unfortunately, it is something that still has no cure. The severity of the condition varies from person to person, with some people seeing effects in their skin and others, in blood vessels, internal organs, and the digestive tract, the Mayo Clinic shares.
It was almost like fate, but in a twisted way, because 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 while 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."
Gay, who was an area teacher in Philadelphia when she was diagnosed at 44, moved home to Los Angeles so she could be with her parents, recalled Saget.
"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."
In fact, he used his grief and turned it 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. The America's Funniest Videos host went on to serve on the Scleroderma Research Foundation board for nearly two decades and hosted their events for more than 25 years. To date, the event has raised $25 million toward research and treatment, adds PEOPLE.
In a May 2021 Instagram post, Saget called it "one of my life's missions to help find a cure for this disease."
To those living with scleroderma, the actor had a message of 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."
Following Saget's death, the Scleroderma Research Foundation remembered him as a "relentless champion" for patients. "In loving memory of Bob Saget, a cherished colleague, friend, and Scleroderma Research Foundation Board member for over 20 years," the caption to a photo of Saget posted on the SFR Instagram account read. "Bob was a relentless champion for scleroderma patients and the mission of the SRF—finding a cure for scleroderma. He will be dearly missed."
Cover Image Source: Getty Images | Photo by Mike Coppola