Sharon Monsky, a scleroderma patient, founded the Scleroderma Research Foundation in 1987 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. A nationally-ranked amateur figure skater at age 12, Sharon Monsky competed with other Olympic contenders 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.

Sharon Monsky - Founder of SRF

She went on to develop her business acumen as a consultant at McKinsey and Company in San Francisco until being diagnosed with scleroderma in 1984.

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 built an organization giving hope to hundreds of thousands of people around the world. Through her efforts, the Scleroderma Research Foundation has become the premier private health and research organization committed to finding a cure for scleroderma and has raised millions of dollars for innovative medical research.

By 1988, less than one year after opening its doors, the SRF had raised more than $250,000 and was rapidly moving forward with the development of a novel research program and public awareness campaign to put scleroderma “on the map”.

In selecting a diverse Board of Directors, Sharon was quickly able to improve the leverage of what she could do personally to fight scleroderma. Shortly thereafter, the establishment of a Scientific Advisory Committee was implemented as a “new approach” to medical research that enabled the Foundation to expedite progress.

In less than one year, the Scleroderma Research Foundation had built a platform for raising capital outside of and beyond the scleroderma patients and their families.  It had become a successful conduit for the generosity of people around the nation who could afford to support such an important cause.

To bolster attention for the disease, the Foundation joined forces with Sharon Monsky’s longtime friend and celebrity chef Susan Feniger to inaugurate Cool Comedy – Hot Cuisine, a star-studded gala featuring award-winning cuisine and top name celebrity entertainment. The event is now an SRF tradition, having raised millions of dollars for research and including such phenomenal performers as the late John Candy, Tim Allen, Dana Carvey, Sheryl Crow, Ellen DeGeneres, the Goo Goo Dolls, Arsenio Hall, Jay Leno, Dennis Miller, Bob Saget, Lily Tomlin, Robin Williams, and others.

In 1993, President Bill Clinton designated August 1993 and August 1994 National Scleroderma Awareness Month. However, to date, only commemorative legislation has been passed.

The SRF continues to lobby Congress for increased funding and attention on scleroderma.

It is clear that scleroderma has not achieved the national recognition that is commensurate with its prevalence, morbidity, and mortality. From the beginning, Sharon set out to change this…

Making scleroderma a household name has always been part of the SRF mission. Great efforts have been taken to ensure scleroderma receives national attention. It is estimated that, since its founding, more than 90 million people have had an opportunity to learn about the disease and the work of the Scleroderma Research Foundation in the news.

In 1996, Sharon Monsky and the SRF were featured in a special ABC made-for-television movie about scleroderma. Entitled "For Hope", the movie starred Dana Delany and was directed and produced by Bob Saget in association with Brillstein-Grey Entertainment. "For Hope" made a huge impact on scleroderma awareness, received critical acclaim, and continues to be aired today on multiple television networks.

Finally, people were beginning to hear about this devastating disease. Next, it was time to take a grassroots approach in spreading the word and increasing funding levels for medical research. The SRF introduced a new program enabling patients, along with their friends and families, to become a part of the team responsible for putting an end to scleroderma.  This was the birth of the SRF’s highly successful Cure Advocate Program.

SRF Cure Advocates live in communities across the nation and have raised hundreds of thousands of dollars for scleroderma research. They have become a critical component of the SRF team and are largely responsible for increasing scleroderma awareness everywhere.

The credo behind the SRF’s research program has always been collaboration. Since its inception, the SRF has continued to very deliberately encourage cross-disciplinary discussion and foster sharing of preliminary results among scientists and clinicians– even with individuals who are traditionally competing against one another for research dollars. Although this sounds like common sense and a requisite for progress in a complex and confusing disease, it is, unfortunately, not the way most medical research is supported.

By requiring all Foundation-funded researchers to attend the annual SRF Scientific Workshop, it is guaranteed that information will be shared, cross-examined, and reviewed not only by the esteemed SRF Scientific Advisory Committee, but also by individual researchers from a broad variety of disciplines. The SRF continues to host this important workshop every year.

Dr. Regis Kelly, Chairman of the Department of Biochemistry and Biophysics for UCSF, summarized the advances made possible by the SRF’s collaborative approach when he said after one of the first SRF Scientific Workshops, “In all my years of medical research, I have never seen a more concerted effort at solving a problem and one in which so much progress has been made so fast.”

The SRF recognized a vital element missing from the scleroderma equation since the beginning: a lack of qualified researchers and clinicians waiting in the wings to take over the next generation of cutting-edge research. In 2000, the SRF inaugurated a Post Doctoral Fellowship Program to train young clinicians and researchers in the disease and pique their interest with the challenge. The SRF now funds a number of post-doctoral fellows in the field and hopes to encourage them to build their careers in scleroderma. The program has been a tremendous success and, already, the SRF has established a track record of providing seed money enabling young researchers to become recognized in their laboratories, helping bridge them to federal funding.

Sharon Monsky, passed away due to complications caused by scleroderma on May 11, 2002. The organization she founded continues to grow and is more committed than ever to fulfilling her vision of a world without scleroderma.

Shortly after Sharon’s passing, the SRF named Luke Evnin, Ph.D., Chairman of the Board of Directors. Dr. Evnin is a general partner and vice chairman for MPM Capital, the world's largest dedicated venture capital investor in life sciences. He has been intimately involved in the creation and growth of many successful organizations and has vast experience in raising capital to support great entrepreneurs and scientists. Dr. Evnin received his undergraduate scientific training in molecular biology at Princeton University and earned a Ph.D. at UCSF's Department of Biochemistry. Under his leadership, the SRF is making great strides in reaching new levels of accomplishment.

Thanks entirely to generous supporters around the world, the history of the SRF is rich with accomplishment and continues to bring together the very best of private industry and academia to direct and manage innovative science on behalf of patients.