Sharon Monsky and the Scleroderma Research Foundation
Sharon Monsky, a scleroderma patient, founded the Scleroderma Research Foundation (SRF) in 1987 as the only organization in the nation dedicated exclusively to finding a cure for this once little-known but surprisingly 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.
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, 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 SRF has become the nation’s largest nonprofit investor in medical research aimed at understanding scleroderma, discovering improved therapies and, ultimately, a cure.
By 1988, less than one year after opening its doors, the SRF had already raised more than $250,000 and was rapidly moving forward with the development of a novel research program.
In selecting a diverse Board of Directors, Sharon was quickly able to improve the leverage of what she could do personally to fight scleroderma. The establishment of a Scientific Advisory Board was implemented as a “new approach” to medical research that enabled the Foundation to expedite progress.
In less than one year, the SRF 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 contributed in an effort to support such an important cause.
To bolster attention for the disease, the Foundation joined forces with Sharon Monsky’s longtime friend, 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, Dana Carvey, Sheryl Crow, Ellen DeGeneres, Jay Leno, John Mayer, Conan O’Brien, Robin Williams and others.
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…
Since its founding, millions of people have had an opportunity to learn about scleroderma 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 actress Dana Delany and was directed and produced by Bob Saget in association with Brillstein-Grey Entertainment. For Hope was based upon the struggles Bob Saget’s sister faced with scleroderma. It 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. Known today as the Cure Crew, this growing program consists of like-minded individuals living in communities across the nation who work independently and together to raise 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 the search for a cure for 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 Board, but also by individual researchers and outside experts from a broad variety of disciplines. The SRF hosts this important workshop every year.
Working with the Scientific Advisors, the SRF recognized a vital element missing from the scleroderma equation: 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 Postdoctoral Fellowship Program to train young clinicians and researchers in the disease and pique their interest with the challenge.
The SRF has funded a number of postdoctoral 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, PhD, Chairman of the Board of Directors. Dr. Evnin is a general partner and vice chairman for MPM Capital, one of the world's largest dedicated venture capital investors 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 PhD at UCSF's Department of Biochemistry. Under his leadership, the SRF is making great strides in reaching new levels of research success.
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.
The continued success of the Scleroderma Research Foundation is made possible entirely by charitable gifts given by generous people around the world who recognize that medical research is the key to a cure. At the close of its 2012 fiscal year, the Scleroderma Research Foundation has raised more than $31,000,000 to support scleroderma research.
“Sharon Monsky was an extraordinary person who was steadfast in her commitment to the support of research into the diagnosis and treatment of scleroderma. Almost single-handedly, she raised the awareness of the public, of the scientific community and of Congress about the potential devastation of having scleroderma. She was an integral part of our National Institutes of Health (NIH) community, having served as a knowledgeable and passionate member of the NIAMS Advisory Council for 8 years.”
-Stephen I. Katz, MD, PhD
Director, National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), National Institute of Health (NIH)
"Sharon Monsky had enormous vision and foresight, as well as the inspiration and tenacity that it takes to make the unnatural happen. When first diagnosed with scleroderma, she quickly and effectively recruited some of the nation's best scientists to create a unique and collaborative research program that has made many important insights into this mysterious disease…
… leading scientists have high hopes that others afflicted with scleroderma will live longer, healthier lives in no small part from a continuation of the research that would not have been started without her. Sharon has made a momentous difference, both to science and to all who were fortunate enough to touch her life."
Bruce Alberts, PhD
National Academy of Sciences
“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…”