Bob Saget Advocated for Rare Disease Cure After His Sister's Death: Here's How to Honor Him

In the wake of Bob Saget's death this weekend, many fans are remembering his charitable efforts as much as his career in entertainment and comedy. Saget became an outspoken advocate for victims of Scleroderma after his sister was diagnosed with the rare disease. Some of his colleagues are raising money for that cause to honor Saget.

Scleroderma is a rare but sometimes serious autoimmune disorder that primarily affects the skin and connective tissue, according to the Mayo Clinic. It typically affects women more often than men and onset begins between the ages of 30 and 50, when skin and connective tissues begin to tighten and "harden." Saget learned about the disease in the late 1980s, according to The Hollywood Reporter, only to find that he had a tragic personal connection to it.

"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," Saget told NIH Medline Plus Magazine. "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."

Saget's sister Gay Saget reportedly attended the event, hosted by the Scleroderma Research Foundation, just to watch her brother perform. Not long after, she began to get sick, and Saget was frustrated by how long it took for her to get the right diagnosis. His friend and colleague Dr. Luke Evnin told THR: "To hear Bob tell the story, Gay's trajector through the medical system was not a particularly positive one. She was misdiagnosed for most of the time she was sick and then, very late into the progression, they decided it was scleroderma. Bob felt that the treatments she received didn't make any difference, and he was horrified by all of it. It's a bit of a tragic story."

Sadly, the experience was reportedly not uncommon. However, Saget threw himself into the effort to help change that for others, eventually becoming a board member of the SRF along with Evnin. Evnin told reporters that he was devastated by Saget's passing since it meant that the comedian wouldn't live to see their work come to fruition. He believes a cure is less than two decades away.


To honor Saget and all the work he did for the organization, the SRF has set up special webpages for new donors to help make a difference. The site also includes a long overview of Saget's work with SRF and all the things he helped accomplish there. Many friends, fans and colleagues are helping to spread awareness in the wake of Saget's passing.