How Bob Saget Became Involved With Scleroderma

Bob Saget is a recognized comedian, television host, and actor. But do you know that he is also an advocate for scleroderma? In fact, Saget is a member of the Scleroderma Research Foundation’s board of directors. Though his sister died from the chronic and currently incurable disease, Saget’s journey with scleroderma started before he had any idea that scleroderma would strike his family.

“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 Saget in an article for Today.

MORE: Tips on how to live well with scleroderma, from the Scleroderma Research Foundation.

When Monsky and Saget became friends, he started helping with activities she organized for the recently created organization. The foundation was founded in 1987 when Monsky realized there was a lack of information about scleroderma and little effort to find a cure. A nationally-ranked amateur figure skater by the age of 12 and now a businesswoman, Monsky decided she wanted to make a difference by creating the only organization in the country that focused exclusively on finding a cure for scleroderma.

A few years after they met, she asked Saget to host and perform a stand-up comedy routine at an event in Santa Monica called “Cool Comedy-Hot Cuisine.” At the time, benefit events were the only way to raise funding for scleroderma research. Even though Saget knew very little about scleroderma, he agreed to appear.

Little did he know that the disease was going to impact his own 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.),” the comedian wrote. “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.”

MORE: Find out about skin care and wound management for scleroderma

Gay Saget was diagnosed with scleroderma when there was little to 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.”

Because of his close friendship with Monsky and seeing scleroderma take his sister’s life, Saget wanted to do more to help fight the disease. In 1996, he directed a television movie titled “For Hope” which was based on his family’s scleroderma story.

“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,” Saget wrote.

MORE: Discover seven tips to help manage Raynaud’s phenomenon during the seasonal changes 

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.

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