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Living a legacy: 1953-2002
Sharon Monsky started the Scleroderma Research Foundation in 1986 as the only organization in the nation dedicated exclusively to finding a cure for this once little-known but incredibly widespread disease. As a patient, she was appalled at how little was understood about scleroderma and the lack of efforts being made to find a cure. As a businesswoman, she knew she could make a difference.
When first diagnosed with scleroderma in 1984, Sharon was given less than two years to live. Eighteen years later, she had beaten the odds in every way and has built a foundation that gives hope to hundreds of thousands of people. Through Sharon’s efforts, the Scleroderma Research Foundation has become the premier private health and research organization committed to finding a cure for scleroderma and has raised more than $14 million for innovated medical research.
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A nationally-ranked amateur figure skater at age 12, Sharon competed with other Olympic contenders in the highest level of competition for 5 years. She earned her B.A. in Economics from Pitzer College and her M.B.A. from Stanford University Graduate School of Business. She went on to develop her business acumen as a consultant at McKinsey and Company, Inc. in San Francisco. After being diagnosed with scleroderma, Sharon left McKinsey to lay the groundwork for an innovative organization that focuses on scientific and medical research and to bring national attention to this disease.
Throughout the impressive history of the Foundation, Sharon was honored for her innovative work to find a cure for scleroderma:
- In 1987, Sharon joined forces with longtime friend and celebrity chef Susan Feniger to inaugurate Cool Comedy – Hot Cuisine, a star-studded benefit gala featuring award-winning cuisine and top name celebrity entertainment. The near-annual event is now in its 12th year of raising national scleroderma awareness and has included such phenomenal performers as the late John Candy, Dana Carvey, Sheryl Crow, Arsenio Hall, Jay Leno, Rosie O’Donnell, and Robin Williams.
- In 1998, President Ronald Reagan and in 1992, President George Bush personally met with and recognized Sharon for her achievements and dedication to medical research.
- In recognition of her contributions in mobilizing and direction scientific and medical research, she was invited in 1992 by Dr. Louis W. Sullivan, Secretary of Health and Human Services, to serve a four-year term on the National Arthritis and Musculoskeletal and Skin Diseases (NIAMS) advisory council of the National Institutes of Health (NIH).
- Donna Shalala, Secretary of Health and Human Services confirmed her support by appointed Sharon to an unprecedented second term on the NIAMS council beginning in February 1996, where she continued to champion high quality and high-yield medical research specifically for women.
- In 1993, President Bill Clinton designated August 1993 and August 1994 National Scleroderma Awareness Month. Congress unanimously passed the commemorative in response to nationwide lobbying efforts organized by the Foundation, patient support groups, and donors who participated in an impressive effort to mobilize Congressional support.
- In 1994, the Society for the Advancement of Women’s Health Research and the Warner-Lambert Company, in cooperation with the National Health Council and the Journal of Woman’s Heath, presented its first-ever National Advocacy Award to Sharon and the Scleroderma Research Foundation. This award was given in recognition of Sharon’s outstanding efforts to raise funds for innovate scleroderma research and awareness of the need for a cure.
- Also in 1994, Sharon received one of six prestigious America’s Awards. The award is dubbed the “Nobel Prize for Goodness” and was given in recognition of Sharon’s vision and commitment to making a difference. Former U.S. Presidents, George Bush, Ronald Reagan, and Gerald Ford are lifetime honorary trustees of America’s Awards.
- In May 1995, Sharon met in a one-to-one meeting with former First Lady and current New York Congresswoman Hillary Clinton to discuss scleroderma and the Foundation’s innovative research approach to chronic illnesses. Later that evening, the First Lady gave an impromptu speech about the future of scientific research and said it should be organized to collaborate the best of science, medicine, and technology.
- In October 1996, Sharon joined actors Bob Saget and Dana Delany on the Oprah Winfrey Show to discuss scleroderma and the ABC movie, For Hope. The ratings for this show were 32% higher than any other Oprah show aired during October.
- In November 1996, Sharon played herself in a special ABC made-for-television movie about scleroderma and specifically featured the Foundation’s search for a cure. Entitled, For Hope, the movie starred Dana Delany and was directed and produced by Bob Saget in association with Brillstein-Grey Entertainment.
- In March 1997, Sharon received the first ever National Volunteer Advocacy Award by Research!America, nation’s premier health research advocacy organization. The award was presented at the National Academy of Sciences in Washington, D.C. by CNN’s Judy Woodruff and Bob Saget.
- In July 1999, Sharon was presented with a Certificate of Commendation from the City of Los Angeles’ Mayor Richard J. Riordan in recognition of her dedicated service as a leading advocate for groundbreaking medical research and support of those affected by Scleroderma.
Through the Scleroderma Research Foundation’s collaborative and revolutionary research, Sharon Monsky’s vision has brought together the very best of private industry and academia to direct and manage the science on behalf of patients. Despite her own very severe case of systemic scleroderma, she continued to live a very active and productive life with her three young children, Max, Samantha and Montana, while guiding the national search for a cure for this deadly disease. Sharon passed away on Saturday, May 11, 2002. Her legacy will continue.
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