Scleroderma Research Foundation
The Scleroderma Research Foundation ("SRF") is a non-profit, 501(c)(3) organization based in San Francisco. The Scleroderma Research Foundation (SRF) is the nation's leading nonprofit investor in medical research to find improved therapies and a cure for scleroderma. In addition, the organization funds and supports various Scleroderma Centers of Excellence, which provide multi-specialty clinical care in dedicated facilities throughout the US, including the Johns Hopkins Scleroderma Center, UCSF, and Stanford University. The SRF has achieved the highest possible rating from Charity Navigator, America's premier charity evaluator, for sound fiscal management and commitment to accountability and transparency.
History:
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 effort being made to find a cure. As a businesswoman, she knew she could make a difference.
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 pioneering 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 $300,000 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.
Less than one year later, the SRF had built a platform for raising capital outside of and beyond 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.
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 actor/comedian 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 defeating scleroderma. Known today as the Cure Crew, this growing program consists of like-minded individuals living in communities all over the world who work both independently and together to raise awareness and the vital funds 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 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 answers to 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 under the direction of Board Member Deann Wright.
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 and with a nimble team of dedicated professionals, the SRF is making great strides in reaching new levels of research success.
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 fiscal year 2017, the Scleroderma Research Foundation has raised more than $45,000,000 to support scleroderma research.
The Foundation funds research based on careful review and recommendations by its Scientific Advisory Board.
Fundraising Events:
Cool Comedy – Hot Cuisine is the Scleroderma Research Foundation’s signature fundraiser under the leadership of Board Members Actor/Comedian/Director Bob Saget and Celebrity Chef Susan Feniger. It’s a night of gourmet cuisine and world-class comedy, featuring the foods of celebrity chefs and appearances from some of the biggest names in comedy - including Jimmy Fallon, Conan O’Brien, Brian Regan, Jerry Seinfeld, Sarah Silverman, Jon Stewart and Robin Williams. The event often features a special musical guest (previous guests have included Counting Crows, Sheryl Crow, Goo Goo Dolls, Dave Koz, John Mayer, Train and others). The evening typically includes a small number of exclusive live auction packages. Attendees include luminaries from the worlds of television, film, music and business—and many others who have been directly or indirectly affected by scleroderma.
Since its inception in 1987, the event has introduced scleroderma and the Scleroderma Research Foundation to thousands of people around the country.
Cool Comedy – Hot Cuisine events are currently held in Las Vegas, Los Angeles, New York and San Francisco.
The Foundation's website provides information on treatments, on research and ways to get involved. It is the publisher of a non-technical magazine on the disease.