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Thanks to the amazing research we fund at John’s Hopkins, Stanford and UCSF, new drugs and new therapies have been developed, helping thousands of those struggling with this sometimes fatal disease.Īfter the loss of my sister, I have had the good fortune of meeting hundreds of scleroderma patients who I feel connected to on a deep level - as though it’s some sort of horrific rite of passage to be in “this club.” Since that time, the Scleroderma Research Foundation has raised over $35 million dollars. I don’t recall you never remember a good set. I’m told I was very funny at Sharon’s funeral. I knew then I would be working the rest of my life to do whatever I could to help those affected. I became a board member the day of Sharon's funeral. Luke Evnin take over as Chairman of the SRF. Once my friend Sharon passed away 13 years ago, we were fortunate enough to have the brilliant Dr. They always say “terrible disease,” yet as we all know, there are no “good” ones. My heart goes out to the patients and families of those afflicted. Still, it’s such a long road for the tens of thousands of people who have this terrible disease.
SCLERODERMA GAY SAGET MOVIE
I believe that TV movie helped put scleroderma on the map for many. It was a very emotional and fulfilling project, a moment in my life that I will always treasure. The writer was Susan Rice, the producer, Karen Moore.
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So, in 1996, I directed a television movie for ABC called “For Hope,” a story ‘loosely based’ on events that directly affected my family. I wanted to do something about it - to share our family’s story with others and let them know that they aren’t alone in this battle. So, just three years after I found out what ‘scleroderma’ was, my sister was sitting in the audience at the benefit, now actually diagnosed with this orphan disease. (Apologies, but that’s a long time for me to be serious without a shot of gallows humor to get me through the pain of discussing it.) The more you experience, the more you tend to believe, “there are no accidents.” Except occasionally in your pants. I have since hosted "Cool Comedy-Hot Cuisine" over 30 times. It was such a moving night for me that I personally promised Sharon that I would be there the following year. The first year I went, Ellen DeGeneres and Rosie O’Donnell performed as well. Savenok / Getty Images for Scleroderma Research Foundation) Robin returned for a total of five times, helping Sharon to raise millions for research programs and the Centers of Excellence at Johns Hopkins, Duke, Stanford and UCSF, among other universities and major medical institutions.Ĭool Comedy - Hot Cuisine, A Benefit For The Scleroderma Research Foundation (Ilya S. I was a performer and later served as its host.
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The beautiful, generous Robin Williams was the first performer to stand up for this cause. It was a night of comedians and amazing food by well-known chefs Susan Feniger and Mary Sue Milliken. That was the best way to fund-raise for this difficult disease - through humor. Performing and hosting benefits were the only ways to fund research dedicated to finding a cure, or, at the very least, finding ways to put the disease into some kind of remission. Sharon had originally cold-called me to perform standup at a benefit in Santa Monica she had titled “Cool Comedy-Hot Cuisine.” I knew nothing about scleroderma. She was the founder and then CEO of the Scleroderma Research Foundation - a great woman, a mother of three who’d been stricken with the disease herself as a young mom. It began 25 years ago when I met Sharon Monsky, a woman who was to become one of the dearest friends of my life. I became familiar with scleroderma several years before my sister came down with it. In other patients, the blood vessels are predominantly affected, leading to profound loss of lung function over an extended period of time. Scleroderma is an incurable chronic disease which means “hard skin.” In some patients scarring forms in the lungs and on the skin, changing a person’s appearance.