Our Story

The Scleroderma Research Foundation (SRF) was established in 1987 by patient turned activist Sharon Monsky, when research on this potentially life threatening illness was nearly nonexistent. Since our founding, we have remained committed to the principle that the best way to help scleroderma patients is to fund the most promising research aimed at improved therapies and a cure.

The SRF is America’s largest nonprofit investor in scleroderma research and devotes a greater percentage of its annual budget to scleroderma research than any other nonprofit organization. Thanks in large part to the SRF and its many generous donors, research is progressing at a faster pace than ever before.

A Dynamic and Collaborative Approach to Research

Board Member Bob Saget at Cool Comedy – Hot Cuisine, 1996

Led by a Scientific Advisory Board comprised of some of the most highly regarded scientists in the nation, the SRF’s research program actively seeks out and recruits experts from the fields of immunology, genetics, and fibrosis, as well as experts in cutting-edge technologies to join the scleroderma research community.

In the past few years, in addition to its core research program, the SRF has led the formation of two large-scale projects aimed at accelerating scleroderma research: the CONQUER Registry, the first nationwide longitudinal registry for scleroderma patients in the United States, and the GRASP Project.

The SRF’s unique collaborative approach is enabling scientists from leading institutions across the nation—and around the world—to work together and develop an understanding of how the disease begins, how it progresses and what can be done to slow, halt or reverse the disease process.

Raising Research Funds and Awareness

Board member Susan Feniger and business partner Mary Sue Milliken at Cool Comedy – Hot Cuisine, 1998

Medical research aimed at finding better treatments for scleroderma patients is both time-consuming and expensive. Thanks to thousands of supporters and generous donors, the SRF is able to expedite research progress and bring top scientists into the field of scleroderma research. The continued success of the SRF research program is entirely dependent upon charitable gifts.

The SRF’s signature event, Cool Comedy – Hot Cuisine (CCHC), is a cornerstone of the foundation’s fundraising efforts. CCHC has raised over $25 million dollars for scleroderma research and has educated thousands of guests about scleroderma.

Education

Chairman of the board Luke Evnin and Emeritus board member Dana Delany at Cool Comedy – Hot Cuisine, 1996

The SRF is dedicated to supporting patients and their caregivers as they learn about how to best manage the challenges of scleroderma. Through supporting Scleroderma Patient Days at a variety of Scleroderma Centers, the SRF webinar series featuring the field’s leading clinicians and researchers and its other publications, the SRF works to educate patients and others about the disease.