In 1982, while working as a management consultant for McKinsey & Co. Inc., Monsky was diagnosed with scleroderma and was told she had only two years to live. The rare disease hardens the skin and internal organs of young women of child-bearing age causing disfigurement, and is potentially fatal.[5]
In reaction to the lack of awareness of the disease in the medical community, she went on to found the Scleroderma Research Foundation in 1987,[2] an organization dedicated to finding a cure.[4] According to the New York Times, "Ms. Monsky's activities generated more than $14 million for research and helped expand understanding of the disease. Money she disbursed for basic medical research on scleroderma led to the publication of scientific articles exploring potential cures. Her work also helped make scleroderma better known."[2] Ms. Monsky applied her business expertise to successful fund-raising efforts. For example, she organized an annual fund-raiser which in 1992 combined top comedians such as Bob Saget plus fine cuisine which drew 420 people and netted donations of $125,000.[5]
Monsky's friend actress Dana Delany said "Sharon's work literally convinced researchers that there was hope in finding a cure ... Before research can begin researchers have to be convinced there is a light at the end of the tunnel. Now we know it's a solvable problem held back only by research resources."[6] In 1996, Monsky appeared in the ABC TV movie For Hope alongside Delany.[7] Reflecting on her work, Monsky has stated, "I'm in the business of finding a cure for scleroderma...and the best thing of all is that I'm in the business to go out of business."[4]
After living 18 years beyond the original prognosis, Monsky died on May 11, 2002, at age 48,[8] due to complications from the disease.[4]