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Remembering Sharon Monsky, the SRF Founder

In loving memory of our visionary leader and dear friend

Remembering Sharon Monsky, the SRF Founder

In loving memory of our visionary leader and dear friend

“My goal is to make this foundation obsolete. My life, and the lives of others, depend on it.”

– Sharon Monsky

An Extraordinary Life from the Start

Within her 48 years on this earth, Sharon Monsky had lived a life filled with more adventure and accomplishment than most people who have lived twice as long. As a young girl, she was a nationally ranked figure skater and one of the top Olympic contenders in the United States. In 1965, she was the youngest female figure skater to have ever achieved the Senior Ladies’ Gold Medal Compulsory Skating Award.

Sharon met her best friend and future husband, Mark Scher, at Pitzer College, where she later received her BA in Economics, and graduated at the top of her class. As a new graduate, she moved to San Francisco where she worked on the Pacific Stock Exchange for First Chicago and ran the most active options trading desk at the exchange—while standing on a box to compensate for her 5-foot-1-inch stature as she barked out orders.

Turning a Diagnosis Into a Mission

By the early 80’s, she had been happily married for five years, was embarking on a career as a management consultant at the prestigious consulting firm, McKinsey and Co., Inc, and was considering starting a family. But in 1981, she began experiencing persistent exhaustion. Doctors initially dismissed her experiences, and it took more than a year and a half before she was properly diagnosed with diffuse systemic scleroderma in 1982. She was told she only had two years to live.

Sharon was shocked to learn that many professionals in the medical field had never even heard of her illness. Frustrated by the lack of awareness and scientific research, she put her business skills to work by founding the Scleroderma Research Foundation in 1987. She educated herself relentlessly, poring over medical research, and channeled her business training into fighting back.

A Legacy That Continues to Change Lives

Defying her original prognosis by two decades, Monsky continued lobbying in Washington for funding and recognition. Under her leadership, the SRF raised $14 million and helped establish two research centers, including the San Francisco Bay Area Scleroderma Research Center at UCSF.

She valiantly battled scleroderma, and with her gifts of charm, intelligence, perseverance, and incredible courage, dedicated her life to making a difference. That dedication is the legacy that has already led to remarkable advancements in treatment options, and will one day, end this disease.

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.”

Sharon’s Vision Lives On

When Sharon passed away from complications of scleroderma in 2002, the SRF continued her battle with a new fervor, pressing forward to fund and facilitate the most promising, highest quality research. Though she is no longer with us, her vision lives on through the Scleroderma Research Foundation today.

Sharon Monsky’s Impact Over Time

1982
Sharon is diagnosed with scleroderma and told she only has a few years to live.
1985
Sharon begins work on what would become the Scleroderma Research Foundation (SRF) after no longer being able to work at McKinsey and Co., Inc
1988
President Ronald Reagan recognizes Sharon for her leadership and dedication to medical research.
1992
President George H.W. Bush recognizes Sharon's contributions to medical research and officially recognizes the first-ever Scleroderma Awareness Month. Sharon is appointed to a four-year term on the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) Advisory Council at the National Institutes of Health (NIH).
1993
SRF-led advocacy efforts help secure unanimous Congressional support for increased national awareness of scleroderma.
1994
Sharon and the SRF receive the inaugural National Advocacy Award from the Society for the Advancement of Women’s Health Research and the Warner-Lambert Company, in cooperation with the National Health Council. Sharon also received the prestigious America's Award, often called the "Nobel Prize for Goodness."
1995
Sharon meets with Hillary Rodham Clinton, then First Lady, to discuss scleroderma and the SRF's innovative, collaborative approach to medical research.
1996
Sharon is appointed to an unprecedented second term on the NIAMS Advisory Council and appears as herself in the ABC television movie, "For Hope," helping bring national attention to scleroderma.
1997
Sharon receives Research! America's first National Volunteer Advocacy Award for her leadership in advancing medical research, presented to her by CNN’s Judy Woodruff and Bob Saget.
1999
The City of Los Angeles and its Mayor, Richard J. Riordan, honors Sharon with a Certificate of Commendation for her advocacy and service to the scleroderma community.
2002
Sharon Monsky passes away from complications of scleroderma. Her vision, determination, and belief in the power of scientific research continue to inspire the Scleroderma Research Foundation's mission to find a cure.
The Sharon Monsky Legacy Society

How Will You Define Your Legacy?

The Sharon Monsky Legacy Society honors those who support scleroderma research with gifts beyond their lifetime. Your generosity can carry forward Sharon’s dedication to finding a cure, and we are deeply grateful for your partnership.

Why Sharon Monsky Founded the SRF

Discover the vision that inspired Sharon Monsky to found the SRF and why research remains at the heart of her enduring legacy.