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Dr. Luke Evnin not only hoped it would happen, he could picture it. Someday in the not-too-distant future, maybe 10 or 15 years, he and longtime friend Bob Saget would catch up and reminisce about their contributions that led to a cure for scleroderma, the rare and sometimes life-threatening autoimmune disorder that largely affects the skin and connective tissue.
It’s a cause they dedicated much of their lives to by working in lockstep with the Scleroderma Research Foundation (SRF), an organization that brought them together first as peers and later, like so many in Saget’s orbit, as close friends. It was a relationship born from shared circumstances: Saget lost his sister Gay to the disease in 1994, and he joined SRF’s board nine years later; Evnin was diagnosed in 1998 and has served as chairman of SRF’s board since 2002.
“I honestly thought Bob and I would be on this together until the end,” recalled Evnin to The Hollywood Reporter over the phone late Monday morning. “Bob was one of those people who didn’t just work with you, he connected with you first as a person and then he would work with you. That was his superpower, if you will.”
The fact that Saget, who died yesterday in Florida at age 65, won’t be around for either a cure or for that celebratory conversation is something Evnin can’t fathom. “I still feel like I will wake up tomorrow and Bob will be there,” explains Evnin, who, in his day job, is a well-known venture capital investor serving as managing director and co-founder of MPM Capital. “To see such a relatively young man, so vibrant and with such a huge heart, leave now right in the middle of the power of what he could do … I don’t have words for it. It’s devastating.”
It’s an emotion shared by so many over the past 24 hours. Tributes are pouring in from far and wide, posted by Hollywood friends and collaborators and by countless fans that enjoyed his work on everything from Full House and America’s Funniest Home Videos to the stand-up stage. And while Saget is being praised as a gifted comedian (who never shied from a dirty joke), a loving family man (to three daughters), the kindest of colleagues (generous with time and advice), his work for SRF in search of a scleroderma cure is never far behind.
As the story goes, Saget was approached to host a comedy fundraiser for SRF even before his sister’s diagnosis, at a time when few knew what it was. (Gay reportedly attended the event to see her brother onstage.) “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, referencing the late SRF 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.”
By all accounts, Gay’s battle with scleroderma was brutal. “To hear Bob tell the story,” Evnin explains, “Gay’s trajectory 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.”
Many other patients have faced similar hurdles. Per SRF, scleroderma is best thought of as a single disease, though “it is a complex disease that can progress in very variable ways in individual patients. Some are affected early with aggressive changes while others have milder symptoms. The disease might progress quickly or slowly. This makes a concise definition — and diagnosis — difficult.” It is more prevalent in women and often surfaces between the ages of 30 and 50.
After seeing firsthand what his sister went through, Saget made it a mission to use his platform to generate awareness while also raising funds for research and a cure. An early and high-profile example of that is For Hope, the 1996 TV movie Saget directed from a script he co-wrote with Susan Rice. It stars Dana Delany, Polly Bergen and Harold Gould, among others, and was inspired by Gay’s battle with scleroderma and how she and the family coped. Despite the heavy subject matter, Delany tells THR that Saget made the experience unforgettable.
“He was so talented as a filmmaker. He’s actually one of my favorite directors I’ve ever worked with,” says Delany, who herself served the SRF board for the better part of two decades. “He has such a fine sense of that balance between comedy and tragedy. His whole life was like that because he lost so many people in his family early on [Saget’s other sister, Andrea, died of a brain aneurysm in 1985]. That combination makes for great drama, and it’s great filmmaking. We would ride up to the edge of melodrama, and then there would be some joke that would break the tension. It was just a joyous, joyous film shoot, and everybody remained very close from it.”
In addition to serving SRF’s board, Saget, who also helped recruit new board members like Regina Hall in recent years, emerged as a key figure in shepherding the org’s annual event, Cool Comedy, Hot Cuisine. The signature fundraiser has raked in more than $25 million over the years and welcomed a who’s who of comedy and music stars through the doors. Along with restaurateur Susan Feniger, Saget often hosted the event, which has featured his Full House and How I Met Your Mother families, Jimmy Kimmel, Conan O’Brien, Dana Carvey, Tracy Morgan, Ray Romano, John Mayer, Louis C.K., Sarah Silverman, John Oliver, Michael Che, Andy Cohen, Jackson Browne, Gilbert Gottfried, George Lopez, Adam Duritz, the Goo Goo Dolls, Jack Black, Jim Gaffigan, Ed Asner, Tom Arnold, Jeff Ross, Josh Radnor, Michael Bolton, Kevin Nealon and Norm MacDonald, to name a few.
Evnin suggested that Saget rarely had to beg for RSVPs. “I was always astounded,” he said. “Bob was always able to lean on his friends in the comedian community and the music community to come out for him. That speaks to two things: his charisma and his willingness to go the extra mile for this disease.” He said that Saget also returned favors. “Bob was always flying to some city in the middle of the country to support another comedian’s efforts in whatever they were focused on. Bob was that kind of person — he would do anything for others, and they knew that about him. That’s why they were willing to do something for him,” says Evnin, who adds, “I count myself fortunate to have had the opportunity to work with Bob on something that was deeply meaningful to us and something we felt was going to be our legacy.”
Many have said they were touched by his tireless commitment on behalf of his sister, who would have celebrated a milestone birthday on Sunday, the day he died. “Today would have been my sister Gay’s 75th birthday,” Saget wrote for an Instagram post shared by SRF and seen below. “She lost her life to scleroderma when she was 47. My heart goes out to all who have lost a loved one to this disease. No one should have to suffer as Gay did, which is why I’m committed to finding a cure and a proud board member of the Scleroderma Research Foundation.”
Though the cure did not come in the comedian’s lifetime, both Evnin and Delany say that his work toward that goal will be Saget’s legacy. “I’m a bit prejudiced, but I think the scleroderma work is what’s going to really resonate for years to come,” says Delany. “It’s going to be really hard to replace him. I hope people come and show support, as a legacy for Bob. I think he would love that.”
Evnin agrees: “We can’t let this horrible moment go without trying to make something good of it.”
To learn more about Saget’s work on behalf of SRF, click here.
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