This podcast, created and produced by phaware, features acclaimed media personality Bob Saget, a Scleroderma Research Foundation board member. It is being offered today on Scleroderma News in honor of World Scleroderma Day. You may listen to the podcast directly, or read it via the transcript that runs below.
I’m Aware That I’m Rare: Bob Saget
The phaware™ interview
Saget is an acclaimed actor, comedian, director, writer and producer. Among many other television shows and movies, he wrote and directed the telefilm For Hope, chronicling his sister’s struggle with scleroderma. Bob joined the Scleroderma Research Foundation’s Board of Directors in 2002. We spoke to Bob on the red carpet of the 30th Annual Cool Comedy Hot Cuisine Gala, which raised more than $1.4 million to fund life-saving scleroderma research.
I would be Bob Saget and I have been on the board of the Scleroderma Research Foundation for many, many years, and I’ve been doing the benefits for 25 years. It’s been a long time.
We’ve raised over $40 million dollars that has gone directly to research. We fund the major research centers where you can do test trials, where you have 3,000 scleroderma patients at Johns Hopkins, Stanford, UCSF. And that money goes directly, that we raise from these benefits, that goes to research to help people try to fight this disease, which took my sister’s life in 1994. It was incredibly difficult and frustrating because we weren’t able to find out what was wrong with her and then she died within three years of being mis-treated. She was given incorrect medical treatment at a regular hospital here in Los Angeles.
And so, I wanted to dedicate the rest of my life and one of the things we do are these benefits, Cool Comedy, Hot Cuisine. Robin Williams was the first person that ever did it. I wasn’t involved then, nor was my sister sick. Robin did it out of the kindness of his heart for Susan Feniger, who is a chef and board member and friend of Sharon Monsky, who founded Scleroderma Research Foundation. Robin did it seven times over the years, and he did it in San Francisco, New York, Los Angeles. He did it in this room, and tonight is a really special night. We had an amazing event two years ago, the great Don Rickles, who I loved and I miss, was at our table. And, tonight, I just can’t take the loss, so I’ve replaced him with Bob Newhart tonight at my table, just to have a father there.
So, Jimmy Kimmel is doing the auction again with me and tonight Ray Romano, Bill Burr, Jeff Garlin, Zach Galifianakis. Counting Crows is performing. It’s just gonna be a beautiful, beautiful night tonight and it’s gonna be irreverent. To be able to laugh during these hard times, forget the hard times of our lives, which are incredibly hard ― but there’s no other way to raise money for this disease. You can’t get it federally funded. It’s an orphan disease in many ways, it affects mostly women in their child-bearing years. 80% of the people, approximately, are women, a huge amount of the African-American population.
So, I’ll be spending the rest of my life doing this, and it’s just something that comedians do because they’re loving and they’re caring and this is the biggest event we’ve ever had. This is almost 700 people in this room at the Beverly Wilshire, and we’ll do it again in December at Caroline’s. We raised $800,000 last year at Caroline’s with 400 people. The idea is we don’t have a high overhead. Our high overhead is to pay for this room tonight. When we do it in a place like Caroline’s, it costs less. You know, it depends on the venue.
But, the idea is, the money. The office is in San Francisco. We only have nine or 10 board members. We get together, it’s a miracle. We have a brilliant chairman, Dr. Luke Evnin. Actelion’s one of our sponsors, they donate a huge amount of money and they are really coming up with a new drug, like, every two years that is directly focused on scleroderma patients.
So, I get to talk to people that say, “You saved my wife.” I didn’t save your wife, but our foundation helps fund the center that gave her the proper medical treatment. Because it’s very hard to go to a rheumatologist in your city, no matter where you live, and think you can get cured of a disease that is as bizarre as this disease, because it affects everyone differently and it also has different incarnations.
I’m very proud to be here tonight and to be able to use comedy, and I’m being honored, which means I’ll also be ― this is very weird, I’ll be, you know … “Bob we’re gonna honor you, could you also host it and produce it, do you mind? Could you book the comics?” Shouldn’t I be honored every year? This is a little embarrassing, to be honest with you, and quite humbling; and to have so many friends come out, it means so much to me. And it’s just starting now, as you can see, it’s starting to get, it’s gonna get very crowded, which is exciting.
You can’t get a disease on the charts without awareness, and so [we have] these events and you doing this podcast and people interviewing me and people hearing about scleroderma. I did a movie in 1996, two years after my sister passed away, for ABC starring Dana Delaney called For Hope, and that didn’t put it on the map, but it sure gave it a face, gave the disease a name.
It’s a hard word to pronounce ― it means hardening of the skin ― and you have to raise money. And to raise money, you do it with these kind of events because if the NIH can’t fund these orphan diseases, and they should, and I think we’re at a time where even less funding is going for these kind of causes.
My name is Bob Saget, and I am aware that I’m rare.
Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to scleroderma.
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