The Scleroderma Research Foundation Story
Our Founder, Sharon Monsky
A Vision of Research for a Cure
In 1987, scleroderma patient Sharon Monsky founded the Scleroderma Research Foundation with the belief that funding medical research was the best way to give hope to those living with the disease. For those who knew Sharon, it’s no surprise that her passion, commitment, and ability to galvanize people toward a noble cause has gained continued momentum and success under the thoughtful leadership she inspired at the Scleroderma Research Foundation.
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.” Though Sharon passed away from the complications of scleroderma in 2002, her mission and vision live on today.
Sharon Monsky understood that research is a journey; one that would not be completed in her lifetime. She understood that the journey had to begin somewhere and that, ultimately, a cure would be found. Thanks in large part to the SRF and its many generous donors, research is progressing at a faster pace than ever before, bringing us ever closer to a world free from scleroderma.
A Dynamic and Collaborative Approach to Research
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, which looks at scleroderma in African American patients and will provide data to help researchers better understand the biology of scleroderma.
More recently, the SRF launched a groundbreaking platform clinical trial, CONQUEST. Based on a model first created over a decade ago to accelerate oncology drug development, CONQUEST is an international, multicenter, randomized, double-blind, placebo-controlled, phase 2 platform clinical trial, and is the first of its kind in rare autoimmune diseases. In its initial iteration, CONQUEST will focus on Interstitial Lung Disease secondary to Scleroderma (SSc-ILD). In the future, the CONQUEST platform will be expanded to address other manifestations of scleroderma.
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 Scleroderma Research Funds and Awareness
Medical research aimed at finding better treatments for people with scleroderma 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 $29 million dollars for scleroderma research and has educated thousands of guests about the disease.
The SRF is dedicated to educating people living with scleroderma and their caregivers as they learn about how to best manage the challenges of the disease. Through the SRF webinar series that features the field’s leading clinicians and researchers, timely email and social media updates on current advances and medical research, and providing tools and resources to increase awareness and knowledge of scleroderma through print materials and online media the SRF works to educate people about the disease.