Since losing his sister Gay to scleroderma, Bob Saget has served on the Scleroderma Research Foundation’s board of directors, and today hosts the organization’s charity-packed benefits around the country. He sat down with ABILITY’s Chet Cooper and Regina Hall to discuss his upcoming benefit, “Cool Comedy/Hot Cuisine,” and shared insight into how he managed to keep laughing in the midst of family tragedy.
Chet Cooper: Thanks for meeting with us.
Bob Saget: I thought this was Alimony Magazine! That’s why I agreed to the interview. I didn’t know this was actually called ABILITY.
Cooper: Half of the article will be about alimony.
Saget: You’ll need to interview people I’ve split up with.
Regina Hall: That’s why I’m here!
Saget: Yes. My future ex.
Cooper: How did you find your way into the entertainment business?
Saget: Oh, my career is very sordid and hard to pin down. I started making eight-millimeter movies when I was nine. Later I made 60 hours of really bad student movies. I realize “really bad student movie” is redundant. Anyway, I went to Temple University film school and made an 11-minute documentary, called Through Adam’s Eyes, about someone to whom I’m very close who had reconstructive facial surgery. It won a Student Academy Award.
I did a lot of filmmaking around that time, and I’d take the train into New York from Philadelphia, where I’d started winning radio contests as a stand-up comic. At 17, I performed at The Improv. And then at 21, I moved to Los Angeles to go to USC film school. I quit school after three days. I figured I’d already gotten my undergrad degree, anyway. So I went back into comedy, performing at The Comedy Store and The Improv.
Cooper: So if someone is planning to follow in your footsteps, he or she should only go to grad school for three days.
Saget: (laughs) Well, the Comedy Store had offered to pay me nothing for eight years!
Cooper: (laughs) Can’t say no to that!
Saget: That’s what this is all about: giving. (laughs) Anyway, I decided to give most of my money to the Comedy Store and The Improv. I found work right away as a comedian, and I also studied acting. I did the Groundlings workshop for a year, where, again, you pay them. Kevin Costner and Barbi Benton were in my first Groundlings class, which should give you an idea of how long ago this all was.
Cooper: Barbi! I haven’t heard her name in a long time!
Saget: She was funny. We did a lot of improvisation involving sex and drugs. Of course, that stuff still takes up most of our lives now.
Cooper: Sex, drugs, and alimony!
Saget: Right! The first thing I ever did of consequence was a Richard Pryor movie called Critical Condition. Then I got a PBS TV show called The Morning Program, which went up against Good Morning, America. I did that for about five months and was fired.
After that, I got Full House, which I did for eight years, and then a year into that, I was asked if I wanted to host a clip show of people getting hit in the nuts—so I did America’s Funniest Home Videos for eight years.
I was working 80 hours a week at two very commercial shows, both of which were family friendly. At the end of Full House, I directed an ABC television movie called For Hope, which is still run on Lifetime. It starred Dana Delany and was based on my sister, Gay, who died of scleroderma.
Cooper: How old was Gay when she died?
Saget: She was diagnosed at 43, and died at 47. Before that, she had been misdiagnosed many times. Unfortunately, rheumatologists in a lot of places don’t have very many scleroderma patients come through their labs, and no one knew what to do with her. I wish I’d known then what I know now.
Hall: My mother has scleroderma. At first the doctors had thought she had lupus.
Saget: Yup. That’s how it was with my sister, too. The doctors put her on cortisones, which make a person nutty. My sister had a psychotic episode, and I put that in For Hope. That was a crazy time.
Anyway, I then moved to directing television for about four years, while continuing to do stand-up. I’ve been a stand-up comic now for 35 years. So now I’m on tour and I have a new show.
Hall: And you’re a complete dirty-mouth.
Saget: I do talk ill. If you see me on HBO or Comedy Central, you know that. But talk about filthy: I directed a movie four years ago called Farce of the Penguins, which Sam Jackson narrated. Christine Applegate, Tracy Morgan, Lewis Black and Mo’Nique were the main voices.
Mo’Nique and Tracy had sex in the film, as penguins. I wrote a song for the film called “He Loved Her in a Way I Never Did,” which was really filthy.
Cooper: You don’t seem to shy away from anything taboo.
Saget: After a lot of tragedy comes gallows humor. Even in the TV movie I did, For Hope, the first half-hour of the TV movie was really funny, but it also helped raise awareness of this disease that affects
hundreds of thousands of people.
It’s actually not even known how many people are affected, because there are so many other ways scleroderma can morph. There are many different ways a person can get it. I first found out about scleroderma when I was asked to do a benefit, before my sister got sick.
Cooper: That’s a weird coincidence.
Saget: Nobody knew about the disease at that time. Rosie O’Donnell, Ellen DeGeneres, and myself all got involved in the benefit, but this was 25 years ago, and none of us had any real television life to speak of. Sharon Monsky, who founded the Scleroderma Research Foundation, organized that benefit.
There’s also a Scleroderma Foundation, and we’re separate from them, but one of the Scleroderma Foundation board heads is also on the Scleroderma Research Foundation board. We’re all basically trying to cure the same thing. Our organization has raised $25 million for research. Our chairman, Luke Evnin, is an amazing man, and lives up in San Francisco with his wife, Deann Wright. They’re both brilliant scientists and doctors.
Dana Delany’s on the board, Caryn Zucker, Kristen Baker Bellamy, who lost her mother to scleroderma, and is married to Bill Bellamy. Robin Williams worked our first benefit. A number of celebrities sign on, which helps to give the disease a higher profile. As you may know, Regina, a significant number of the people who get scleroderma are African-American.
Cooper: Was your sister black?
Saget: (laughs) If it will help raise money, yes. My black sister and my white sister passed away from this disease, but my Asian sister is still on the fence.
During the times I’ve been to Washington, DC, to lobby, I’ve seen everybody fighting for their own causes. They’re like, “Why are you giving money to that foundation? Don’t give money to cystic fibrosis! We have to help multiple sclerosis!” They’re all competing for national funds, but we’ve resolved that issue because we’re privately funded.
Hall: Do you find it’s harder to get funding to fight a disease that predominantly affects women, many of whom are black?
Saget: We believed that for a while, yes. I’d like not to believe it, personally. I’ve met so many people—including Jeff Mace, one of our board members, and a brilliant lawyer—who have the disease. I’ve met a lot of men with scleroderma.
Fortunately more people now than ever are in remission, thanks to advances in the drugs. I just hosted a thing for my heart doctor at Cedars Sinai, where researchers are rebuilding the heart with stem cells. The progress in science is amazing.
Cooper: Do you know if the centers you fund share their research? Sometimes all this money goes into the research and development, and then no one shares the information.
Saget: There is some clashing here and there, sure, but our research is shared. Everything is about the research. I don’t care about anyone’s quality of life but my own. [laughter] I hurt my knee, I hurt my toe, my hair’s messed up. I’m having some problems of my own. I can’t even ride a motorcycle with a guitar anymore.
Seriously, though, we’ve really done some amazing stuff. My part of the effort has been to host benefits that raise consciousness and make a lot of money. Robin Williams has done our event six or seven times, and Dana Carvey is doing our San Francisco event on May 4th, at the Palace Hotel. One year, Dana performed, walked offstage and bid ten grand on a painting that I don’t even think he wanted.
This May, Counting Crows is going to perform. At the last event we did in New York, I had Brian Regan, Seth Meyers, Brian Williams, Jeff Ross and Jerry Seinfeld. Jerry said yes within a week. We raised $700,000 at Caroline’s. We did an event in Los Angeles a couple years ago, and I asked John Mayer to perform. He said yes within a week.
I am such a starf–ker, I can’t even tell you. For a lot of people who do my benefits, I agree to do their benefits, too. It’s great because you know you get to help people in a real way. There’s such tragic stuff out there.
Cooper: It must feel good to know you’re having an impact and raising awareness.
Saget: Absolutely. I filmed documentaries of 15 to 20 patients, all of which are up on the Scleroderma Research Foundation website. One is called “Changing Lives,” another is called “Moving Forward.” In all of them, I’m just talking to patients. But when I’d gone back to interview the same patients again, two years later, about a third of them weren’t there—either they couldn’t make the trip or they had passed away.
A beautiful Georgetown student came to one of our benefits in New York. This amazing girl, who was only 18, got up and gave the most moving speech. Afterward, I interviewed her at Johns Hopkins. The next year, before we did the benefit, I learned she’d passed away just three weeks after the night she’d spoken to the crowd.
Saget: I’ve met so many people with this disease. I did a show two nights ago, in Tampa. This woman is there and immediately I know she has scleroderma, because scleroderma has a look. The tightening of the skin almost makes it look as if you’ve had a facelift. Some people say Lot’s wife had scleroderma, the way she turned to stone, but I think she was just tired of him. [laughter]
Anyway, this young lady gave me a thank you note. She had gone to Fred Wigley, a fantastic doctor, and she told me she was now in remission. If you’re diagnosed with an orphan disease like scleroderma, go where people see a lot of scleroderma patients. Normal rheumatologists don’t see many—they’re busy saving millions of people with lung issues.
I know a few people with scleroderma who’ve gone to doctors who specialize in treating it, and they’ve been led into remission. For them, the disease has just stopped. There’s nothing more rewarding than that.
Cooper: In addition to the passing of your sister Gay, have you had much experience with loss in your family?
Saget: My mother and father lost four children. All I saw was death.
Cooper: You lost three siblings?
Saget: I didn’t know the two who had been born before me. The boy had been given my name, two years before I’d been born. I had another sister who died of a brain aneurysm at 34. So please come back to me for the brain aneurysm issue!
Hall: I saw your movie, For Hope, and I didn’t know it was a true story until the end. It was just a good movie. And then, later, I read an article in Vogue about a young woman who had gotten a flu that ended up affecting her heart. The woman’s organs hardened, and she discovered she had scleroderma. About two weeks after I’d read that, my own mother was diagnosed.
Saget: Wow. That’s really strange.
Hall: I suppose it’s sort of similar to your involvement in scleroderma before you’d realized your sister had it.
Saget: I had gotten involved because of Sharon Monsky. She was such an inspiration. I remember there was a drug that was supposed to make a patient more elastic, and it was going to be discontinued. But Sharon went to the people who made the drug and said, “You can’t discontinue this.” They didn’t, and they sent it to her for the rest of her life, which was about another 15 years, I believe. Sharon had scleroderma for 20 years, and had these three amazing kids. Her widow’s a dear friend of mine. He also contributes to the foundation.
Cooper: Do you have kids of your own?
Saget: I have three. And hopefully more by the time this article comes out. I’m in a serious relationship with you now. [laughter] Regina told me I have a cute butt. Have you done a colonoscopy issue?
Hall: When my mom was diagnosed with scleroderma, I was very scared, and Bob called me and gave me so much information. I had seen his movie, and I’d only heard about the worst cases of scleroderma. There’s no cure for it, so you automatically think of it as a death sentence.
Anyway, Bob called me and told me about Dr. Wigley. My mom lived in Washington, and Dr. Wigley is in Baltimore at Johns Hopkins. My mom’s goes to see him every six months. Dr. Wigley can see if the disease is progressing by looking at my mom’s capillaries and their amount of redness.
Cooper: Is redness a result of the inflammation?
Saget: The system attacks itself, like any other flesh-eating kind of virus. Scleroderma is hardening of the skin. Derma is “skin” and sclero is “hardening” in Greek.
Hall: My mother’s not on any medication right now. She’s doing well.
Saget: She needs to keep warm. Cold is really, really bad for people with scleroderma. You should talk to Luke Evnin about it. He has the disease and is a scientist and a genius. He runs MPM Capital, and his company invests in pharmaceutical corporations.
Cooper: Did he do that sort of investing prior to having scleroderma?
Saget: You get involved with the disease when you’re touched by it, whether scleroderma hits yourself or someone close to you. Luke got involved with the cause and became familiar with it before he was diagnosed.
Hall: I’ve never met a man who has it, but I’ve met several women.
Cooper: It generally strikes during the child-bearing years, right?
Saget: Right. A lot of people haven’t survived it. What I would advise people do is go through our website and find a center of excellence where these professionals see thousands of scleroderma patients.
Cooper: Your organization funds work being done at Harvard, Stanford and Johns Hopkins. What about UCLA?
Saget: There’s nothing in Southern California, because that region has its own way of doing things. I can recommend a couple of doctors who work out of UCLA, but because of what happened to my sister, I would recommend one of the few specialists who sees lots of patients, along with a local rheumatologist. I wish I could’ve sent my sister to Dr. Wigley. I also would have gotten her a rheumatologist here in Los Angeles, because there are a couple great ones.
Hall: The great thing about Dr. Wigley is that he will never not accept a new patient.
Saget: The man takes calls all night long! Patients have his cell phone number. His wife doesn’t love it. [laughs]
Our foundation, for the past 20 years, has funded a lot of different centers. The tests continue as long as the funding does. You run your tests, you give a couple hundred thousand, and maybe you can do a $1 million grant. That’s a lot of dough a lab can use to continue its work. When I did a second round of interviews at Dr. Wigley’s place, I couldn’t believe how much more staff he had gotten and how much bigger his place had become.
When I see how Dr. Wigley helps people, I know my sister didn’t have to die. I think she was dealt a bad hand. My sister was fouled by people. You want to go to a place that has expertise. I know people who are HIV positive and who are doing very, very well now, but they wouldn’t have been 10 years ago. And I hope that sort of progress continues, because science always has new problems to deal with. Your magazine is always going to have a cover story, unfortunately!
Cooper: What’s your latest undertaking, career-wise?
Saget: I’m doing a new TV show the network says I can’t talk about yet. But I did a show on A&E this past year called Strange Days. I rode motorcycles.
Cooper: I’ve heard you’re a really good motorcycle rider.
Saget: I’m fantastic. (laughs) I actually joined this motorcycle club called Iron Order, and rode from Nashville to Daytona. I got in and out of a sidecar at 80 miles an hour. I was, like, two loose greasy bolts away from being hurled into oncoming traffic.
Hall: I don’t know anything about sidecars, Bob, but I want to say thank you for the work you’re doing. You’ve really touched my family.
Saget: I’m honored. I just hope the photographs you took of me come out okay. I have a vampire-like quality.
The word “scleroderma” is Greek for “hard skin”. Tightened skin is the most visible characteristic of the disease. Scleroderma, which often affects a person’s internal organs, can have life-threatening consequences. Depending on the subtype of the illness, this disease can do great damage to the lungs, kidneys and gastrointestinal tract. Damage to peripheral vasculature can result in loss of digits or limbs. In some cases, joints and muscles are also affected, resulting in a loss of mobility.
Scleroderma falls into several different disease categories. It is a vascular disease that can constrict and injure tiny blood vessels. It is a connective tissue disease that can cause abnormal changes to skin, tendons and bones. Like many other rheumatic disorders, scleroderma is believed to be an autoimmune disease because it seems to trigger the body to make antibodies against itself.
The symptoms and severity of scleroderma vary from person to person, and the course of the disease is often unpredictable. The number of women affected is disproportionately high—some estimates suggest that as many as four out of every five patients are female. The disease most often strikes people between the ages of 20 and 50; however, children and those above age 50 have also been known to be affected. Scleroderma crosses all ethnic groups.
There is no way to prevent scleroderma, and there is no cure. Treatments are available for some, but not all, of the most serious complications of the disease. Current modes of treatment include chemotherapy drugs, vasodilators and ACE-inhibitors, and medications that modulate the immune system. Most treatments act to slow the progression of the disease and limit damage, rather than arrest it. Some drugs currently used in treatment of scleroderma can have serious side effects.
Photos by Nancy Villere – CrushPhotoStudios.com