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No one should have to suffer as my sister Gay did.
She was 44 in 1992 when she was diagnosed with systemic scleroderma, a disease that strikes mostly women in the prime of their lives. She had been living in Bucks County, Pennsylvania, but moved back to Los Angeles to be with my parents as they sought medical care for her.
Two years later, she passed away.
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. In other patients, the blood vessels are predominantly affected, leading to profound loss of lung function over an extended period of time.
I became familiar with scleroderma several years before my sister came down with it. It began 25 years ago when I met Sharon Monsky, a woman who was to become one of the dearest friends of my life. 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.
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. 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. That was the best way to fund-raise for this difficult disease — through humor.
I said, yes.
It was a night of comedians and amazing food by well-known chefs Susan Feniger and Mary Sue Milliken.
The beautiful, generous Robin Williams was the first performer to stand up for this cause. I was a performer and later served as its host. 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.
The first year I went, Ellen DeGeneres and Rosie O’Donnell performed as well. It was such a moving night for me that I personally promised Sharon that I would be there the following year. I have since hosted "Cool Comedy-Hot Cuisine" over 30 times.
'There are no accidents'
The more you experience, the more you tend to believe, “there are no accidents.” Except occasionally in your pants. (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.)
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.
One year later, Gay lost her life to it. She was only 47.
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, in 1996, I directed a television movie for ABC called “For Hope,” a story ‘loosely based’ on events that directly affected my family. The writer was Susan Rice, the producer, Karen Moore.
It was a very emotional and fulfilling project, a moment in my life that I will always treasure. I believe that TV movie helped put scleroderma on the map for many.
Still, it’s such a long road for the tens of thousands of people who have this terrible disease. My heart goes out to the patients and families of those afflicted. They always say “terrible disease,” yet as we all know, there are no “good” ones.
Once my friend Sharon passed away 13 years ago, we were fortunate enough to have the brilliant Dr. Luke Evnin take over as Chairman of the SRF. I became a board member the day of 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 better live a long-ass time.
I’m told I was very funny at Sharon’s funeral. I don’t recall; you never remember a good set. I do remember that nobody heckled me.
Since that time, the Scleroderma Research Foundation has raised over $35 million dollars. 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.
After 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.”
We have been touched by all of the comedians and other performers who have given of their time to perform at all of our "Cool Comedy-Hot Cuisine" benefits over the years, which take place annually in New York and every other year in Los Angeles, San Francisco, and now Las Vegas.
So many dear friends have been there for me and for all of us at the foundation including: Robin Williams; Whoopi Goldberg; Dana Carvey; Jimmy Kimmel; Seth Meyers; Jeff Ross; John Oliver; Jeff Garlin; John Mayer; Jim Gaffigan; Jimmy Fallon; Rodney Dangerfield; Jay Leno; John Stamos; Bill Bellamy; Dave Koz; Sarah Silverman; Jerry Seinfeld; Conan O’Brien; Craig Ferguson; Jon Stewart; Lily Tomlin; Ben Folds; Pat Monahan; Train; The Goo Goo Dolls; Adam Duritz and Counting Crows; Sheryl Crow — and at our New York event last December: Andy Cohen; Kevin Nealon; Michael Che; and Louie C.K., just to name-drop 32 celebrities.
I will spend the rest of my life dedicated to helping our amazing Board of Directors at the incredible Scleroderma Research Foundation to work with the best medical minds as we fund a cure. We are still at the stage where we need attention and much more funding.
But as much as I love the Foundation, I want even more to hear that we have found a cure and that we have put the Scleroderma Research Foundation out of business.
For more information, visit the Scleroderma Research Foundation