Our Story
The History of the Scleroderma Research Foundation
When scleroderma patient Sharon Monsky founded this organization in 1987, she knew that a cure would not come in her lifetime. Still, she set out to develop a foundation that would deliver life-changing results by bringing the brightest minds in science together and harnessing the power of technology to accelerate the progress of scleroderma research.
What began as a bold vision has grown into the largest nonprofit investor in scleroderma research in the United States. Today, the SRF continues to bring together leading scientists, clinicians, people living with this disease, and those who care for them to help raise global awareness while accelerating research towards better treatments and, ultimately, a cure.
Building a Research-Driven Organization
In 1987, scleroderma patient Sharon Monsky founded the Scleroderma Research Foundation with the belief that funding medical research was the best way to give hope to those living with the disease. For those who knew Sharon, it’s no surprise that her passion, commitment, and ability to galvanize people toward a noble cause has gained continued momentum and success under the thoughtful leadership she inspired at the Scleroderma Research Foundation.
As Sharon once said, “I could organize a support group to help people in my community living with scleroderma or I could establish an organization that would bring the best of science and technology together in an effort to discover better treatments and a cure for people everywhere living with scleroderma. It wasn’t easy, but I chose the latter.”
Raising Awareness
Sharon knew that bringing attention to this little-known disease would require bold ideas and influential voices. While living in Los Angeles, Sharon turned to her close friend and former roommate, celebrity chef Susan Feniger. Together, they developed what would become the SRF’s signature fundraising event: Cool Comedy • Hot Cuisine. Robin Williams performed at the very first one, and over the years, more world-renowned talent donated their time—including Bob Saget, who would go on to become a board member for 20 years, and one of the SRF’s most passionate supporters.
Though Sharon passed away from the complications of scleroderma in 2002, her mission and vision live on today.
Sharon Monsky understood that research is a journey; one that would not be completed in her lifetime. She understood that the journey had to begin somewhere and that, ultimately, a cure would be found. Thanks to the many dedicated scientists, scleroderma community members, and donors, research is progressing at a faster pace than ever before, bringing us ever closer to a world free from scleroderma.