This Cause Was Incredibly Close to Bob Saget’s Heart—Here’s Why

Comedian Bob Saget holding a microphone and card

Comedy fans everywhere were shaken earlier this month when Bob Saget passed away. The actor and beloved small-screen mainstay died at the age of 65; his cause of death is still being investigated.

Most of us will remember Saget for his humor, or the way he shaped 90s TV as the lovable, clean-freak single dad Danny Tanner on Full House. Those who grew up watching him raise his three onscreen daughters can probably still hear his problem-solving speeches and pep talks, and will for years to come. 

But Saget’s legacy is much larger than that of just a sitcom icon: He was fervently devoted to raising awareness of a disease called scleroderma, an autoimmune disease that took the life of his sister Gay Saget in 1994. He was on the Board of Directors at the Scleroderma Research Foundation (SRF) and aided in raising millions of dollars that helped further research of the disease.

Upon his passing, people have been reflecting on the impact Saget had in both the comedy and medical worlds. Katie spoke to Luke Evnin, Ph.D., the chairman of SRF’s Board of Directors, to learn more about Saget’s legacy. 

Katie Couric Media: First and foremost, what is scleroderma? 

Dr. Luke Evnin: Scleroderma is a rare and often life-threatening autoimmune disease that can cause fibrosis in the skin and other vital organs. The name scleroderma literally means “hard skin” because the disease results from a patient’s immune system attacking their organs, which in turn can stimulate overproduction of collagen (the key protein component in scar tissue), leading to the hardening and tightening of the skin and connective tissues (fibrosis). In the most serious cases, complications result in damage to the heart, lungs, and digestive system. Approximately 80 percent of people with the disease are women, although men and children can also get scleroderma.

A diagnosis of Scleroderma is often elusive and some patients are not appropriately diagnosed for several years. Why do you think that is?

It remains a reality that many patients aren’t accurately diagnosed early in the disease course. Scleroderma is heterogenous (we are referring to the systemic form since the designation “scleroderma” typically refers to systemic disease — abbreviated SSc — although there is a localized version of the disease), meaning that each patient presents with different features as compared to the next. The diagnosis of SSc is based primarily upon the presence of characteristic clinical findings and supported by specific abnormalities observed from a blood test. However, no one of those clinical findings is unique to SSc.  Moreover, the disease can affect different organs in the body in different patients, including skin, pulmonary vasculature, pulmonary tissue, heart, GI tract, and musculoskeletal system. Also, the disease progresses at different rates for each patient. The antinuclear antibody (ANA) test is positive in approximately 95 percent of patients with SSc, and therefore a negative test should prompt consideration of other fibrosing illnesses. However, there’s no one blood test that tells a physician that a patient has scleroderma. 

I know there’s no cure, but have there been any new developments that reduce some of the symptoms or slow the progression of the disease? 

The standard of care has advanced over the past two decades, as compared to when Bob’s sister Gay was treated. For example, immunosuppressive medication such as Cellcept mycophenolate is now commonly used, often early in the disease course, and delivers a strong benefit to many patients. 

The SRF has launched the nation’s first and only registry to track patients from all across the nation as their disease changes over time. This registry called CONQUER will uniquely reveal which treatments in the modern era are delivering the most benefit and this information will enable further refinement of the standard of care for all patients.  

The SRF helped advocate for the FDA approval of the first drug that demonstrated a treatment benefit in scleroderma-associated lung disease, called interstitial lung disease, in September 2019. Ofev (nintedanib) was subsequently approved and it’s now available for patients with this complication. 

The SRF is currently laying the groundwork to launch a revolutionary platform to conduct efficient clinical trials in scleroderma patients. This platform is designed to substantially enhance the number and range of experimental therapies that become available to scleroderma patients and to help speed up the ultimate FDA approval of novel, efficacious therapies.   

How did Bob Saget become involved in this cause?

SRF Founder Sharon Monsky said she knew two things: one, that altering the course of scleroderma would take world-class research by brilliant and dedicated scientists and two, that kind of research would come with a high cost. 

To raise money, Sharon, chef Susan Feniger, and Susan’s business partner chef Mary Sue Milliken hit on the idea of serving up great food and comedy to bring people together. The first event was held in 1987 at Susan and Mary Sue’s restaurant, CITY, and Robin Williams made a surprise appearance. After that, word spread among top comedians and Bob Saget agreed to perform a few years later in 1991. In an ironic and sad twist of fate, Bob’s sister, Gay, was diagnosed with scleroderma later that same year, which fueled his incredible passion for finding a cure. 

Bob performed at Cool Comedy • Hot Cuisine ever since, soon taking on the role of MC and co-chair of the event, before joining the SRF Board of directors in 2003. He helped the organization raise more than $40 million to advance the mission, including $26 million through Cool Comedy • Hot Cuisine events.

How did Gay’s situation further Bob’s resolve to find a cure? Bob often talked about how painful it was that there was so little known about the disease, or how to treat it, when his sister Gay was diagnosed in 1992.  

When Gay began experiencing fatigue, puffy hands, and painful skin inflammation, doctors told initially told her she had Lupus, Epstein-Barr disease, even mental illness, before eventually diagnosing scleroderma. And because so little was known about how to treat the disease, some of the treatments she received caused her symptoms to worsen. The pain Bob and his family experienced after losing Gay to this disease propelled him into action. Following her passing in 1994, he spent the rest of his life spreading awareness about scleroderma and raising funds for research that would bring better treatments and a cure because he didn’t want others to suffer the way Gay had. 

“I can’t watch what happened to my sister happen to more people,” Bob said in a recent interview with Dr. Jonathan LaPook on CBS Morning News. “My sister should not be dead. And that’s one of the things that has kept me doing this — and will keep me doing this — until I’m gone…and I’ll do it when I’m gone.”

I’ll never forget a movie Bob made about his sister, starring Dana Delaney. It was so powerful. Do you think in some ways it put the disease on the map?

When For Hope aired on ABC on November 17, 1996, it was the first — and still only — movie to tell a family’s story of what it’s like to live with scleroderma. Bob had lost his sister to scleroderma, two years earlier, in 1994. He directed and executive produced this film as a statement of the frustration he and his family had been left with after his sister had been misdiagnosed and mistreated for the symptoms.  

Here’s what Bob had to say about the film in his own words: “It was a very emotional and fulfilling project, a moment in my life that I will always treasure,” Bob Saget said. “I believe that TV movie helped put scleroderma on the map for many. I will spend the rest of my life dedicated to helping our amazing Board of Directors at the incredible Scleroderma Research Foundation to work with the best medical minds in science as we raise the funds for research to one day find a cure.”

The film continues to be a source of inspiration and information today — hundreds of thousands of people have viewed the film since its TV airing — more than 5,000 people watched the film on the SRFs YouTube channel in the last month alone.

Bob really gave his all to raising money for scleroderma research. Can you tell us about some of the things he did? 

For 30 years, Bob gave his all to Cool Comedy • Hot Cuisine, an event he co-chaired with fellow SRF Board member Susan Feniger, which brought together world-class comedians, musicians, and performers to raise over $26 million to support the work of the Scleroderma Research Foundation. Bob also actively contributed to the day-to-day operations of the organization and played a pivotal role in its success. He often met and spoke with patients, built lasting relationships through his gift of storytelling and laughter, and shared his own experience of the impact of scleroderma in his own family’s life. He passionately sought to find a cure and connected deeply with those affected by the disease. There have been tributes written and shared about Bob and what he meant to so many. 

How can people honor Bob and support your important work?

Inspired by the generous outpouring of love and admiration from friends, family, and fans seeking to honor Bob’s legacy following his passing on January 9, 2022, the Scleroderma Research Foundation has established a tribute fund to extend Bob Saget’s 30-plus years of commitment to the organization’s mission to find a cure for scleroderma. Fellow SRF Board members, philanthropists, and close friends Deann Wright and Dr. Luke Evnin have generously pledged to match the first $1.5 million that is received in this tribute and we would be grateful to have his fans and admirers help us continue his work