Bob Saget 'Wanted People to Understand How Bad' Scleroderma Can Be: 'This Was His Life's Work'

The actor, who died Sunday at age 65, was an "irreplaceable" part of the Scleroderma Research Foundation, says chairman Luke Evnin

Bob Saget was a tireless champion for causes of all kinds, but none were as close to his heart as scleroderma research.

The beloved comedian — who died Sunday at age 65 — had spent the last 25 years "committed" to raising awareness of scleroderma, the rare autoimmune disorder that his older sister Gay died from in 1996.

"He was very close to his sister, and I think part of his long-term commitment was because he was really disappointed with the understanding of her condition," Luke Evnin, the chairman of the Scleroderma Research Foundation and co-board member with Saget, tells PEOPLE. "He was very disappointed with the sophistication of the tools that were available at the time to alleviate or change the course of her disease, and even just ease her suffering at the end. I think that he was committed to really see[ing] that it would not happen to any other patient."

Saget had first heard of the Scleroderma Research Foundation (SRF) in 1991, when, in a "weird coincidence," he generously agreed to host their annual Cold Comedy, Hot Cuisine fundraiser, despite not knowing about the disease at the time, Evnin says.

Bob Saget and Luke Evnin
Bob Saget and Luke Evnin. Steve Jennings/Getty

"That was the kind of person that Bob was — he had no connection to scleroderma but was willing to help and headlined one of those early benefits," he explains. "Then, as fate may have it, his sister was diagnosed with scleroderma a year or so later, and unfortunately, succumbed to complications of the disease not long after that."

Saget joined SRF's board of directors in 2003, "but was making major contributions even well before that," says Evnin. Each year, Saget would call on his comedian friends to take the stage at their Cool Comedy, Hot Cuisine benefit and bring greater awareness to the cause.

"This disease is rare and, certainly back then, had relatively little common notoriety, which makes it super hard to fundraise and just attract attention. Bob really wanted to change that," Evnin says. "He wanted people to understand how bad this was and to have an appreciation for what these patients were going through."

Saget's contributions to the cause are "immeasurable," adds Evnin.

"I really feel like the progress that we've made is just so intertwined with his personal commitment," he notes. "I don't even know how to deconvolute the two anymore. He's just been an amazing partner and really a backbone of everything we've gotten accomplished over the [past] 20 years."

Since Saget's sister was diagnosed in 1994, "the standard of care has markedly changed," Evnin says. Because there's greater awareness of the disease, patients can get diagnosed sooner and start immunosuppressive therapy earlier.

"Early intervention has really made a big difference for a lot of patients," Evnin explains. "Unfortunately, we still don't have a drug that can reverse scleroderma, but we have drugs that slow the progression and can meaningfully extend life and minimize the symptoms. That's a really big difference to where we were 25 years ago."

bob saget
Bob Saget. Amanda Edwards/Getty

Though they've made progress, Evnin says losing Saget before researchers could find a cure is incredibly tough to accept.

"I sort of always imagined that Bob and I would be working together on this for another — I don't even know, decade — while we were solving the rest of the problems and we'd be there when we had the cure in hand and looking back on all we'd been able to accomplish together," he says. "I don't think there'll be a board meeting that will go by when we won't be wondering when Bob's going to walk in the room."

Still, he says, Saget's "contributions will live on."

"This was his life's work," explains Evnin. "He put his heart and soul into the foundation over so long. It started with his sister, but I think it really grew even beyond that, after he touched all these patients. I honestly believe that Bob would want people to think about the Scleroderma Research Foundation when they think about him."

Those interested in donating to the Scleroderma Research Foundation in Saget's memory can do so here.

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