Bob Saget is a well-recognized comedian, TV host, and actor. But what one might not know is that he is also an advocate for scleroderma. Bob Saget is currently a member of the Scleroderma Research Foundation’s Board of Directors. While his sister died from the chronic and incurable disease that causes scarring in some organs and skin, Saget’s path with scleroderma started much earlier, before he had any idea that scleroderma would strike his family too.
“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,” wrote Bob Saget in an article for Today.
When Sharon Monsky and Bob Saget became friends, he started helping with the activities she was organizing for the recently created organization. The Scleroderma Research Foundation was founded in 1987 when Monsky realized there was a lack of information and effort being made to find a cure for her disease. A nationally-ranked amateur figure skater at the age of 12 and a businesswoman, Sharon decided she wanted to make a difference and she created the only organization in the country that focused exclusively on finding a cure for scleroderma.
A few years after their initial meeting, she asked Bob Saget to be the host of a benefit in Santa Monica and perform a stand-up comedy routine at the event called “Cool Comedy-Hot Cuisine.” At the time, these types of beneficiary events were the only way to raise funding for scleroderma research. Even though Bob Saget knew very little about scleroderma, he agreed to appear at the benefit.
Little did he know that the disease was going to become very familiar to his family. “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.),” he said. “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.”
Gay Saget was diagnosed with scleroderma and there was little that could be done. “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.”
Due to his close friendship with Sharon Monsky and seeing scleroderma take his sister’s life, Bob wanted to do more to help fight the disease. Therefore, in 1996, he directed an ABS television movie titled “For Hope,” which was based on his family’s story with scleroderma. Ever since Bob has been dedicated to the Scleroderma Research Foundation and he regularly says that he has been fortunate to meet hundreds of scleroderma patients who inspire him to continue.
“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.”
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