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America’s leading nonprofit investor in medical research
to find better treatments and a cure for scleroderma.
Dear Friends,
Our site is temporarily under construction.
In the meanwhile, please find below a brief overview of our mission, funded research, and upcoming events.
Thank you for your patience,
The Scleroderma Research Foundation
COOL COMEDY HOT CUISINE
Cool Comedy Hot Cuisine (CCHC) is an over 30 year tradition in Los Angeles, San Francisco, New York. It’s the SRF’s signature fundraising and awareness-building event. CCHC is hosted by actor/comedian Bob Saget with exceptional cuisine prepared by Bravo Top Chef Masters Susan Feniger and Mary Sue Milliken. The event has raised more than $21 million to support scleroderma research and introduced millions of people to the disease and the incredible work of the Scleroderma Research Foundation. All funds raised at CCHC are allocated to the Foundation’s research program.
READ MORE ABOUT OUR UPCOMING EVENT IN LA
APRIL 25TH, 2019
OUR MISSION:
To fund and facilitate the most promising, highest quality research
aimed at improved therapies and, ultimately, a cure for scleroderma
The Scleroderma Research Foundation (SRF) is America’s leading nonprofit investor in scleroderma research, and is laser-focused on finding a cure for this rare and often deadly disease.
Scleroderma is a relatively rare (1 in 4,000 people in the U.S.) autoimmune disease often affecting the internal organs with life-threatening consequences. Scleroderma has one of the highest mortality rates of the rheumatic diseases. Four out of five patients are women, most between the ages of 30 and 50, but the disease also strikes men and children across all ages and ethnic boundaries.
WE PROMOTE DISCOVERY:
Research is the Key
For 30 years, the SRF has remained committed to its mission of facilitating improved therapies and, ultimately, a cure for scleroderma. To achieve this goal, the SRF is pursuing a multi-pronged approach including substantial grants for investigators pursuing breakthrough basic research and a dedicated effort to facilitate leading translational research and novel clinical studies.
The SRF research program seeks to deepen knowledge and understanding of this life-threatening condition, by facilitating research and collaboration among the world’s top scientists and medical institutions. Funded projects are allocated in three broad categories: clinical, translational and basic research.
While 20% of the SRF’s budget is devoted to clinical endeavors, including development and sustaining support for Clinical Centers of Excellence, 80% supports basic and translational research projects, such as developing more predictive animal models, biomarker development, defining relevant biological pathways, and the advancement of new technologies to better understand the underlying causes of scleroderma.
WE ADVOCATE FOR COMPREHENSIVE CARE:
Connecting Patients and Physicians with Clinical Excellence
Outside of the laboratory, SRF resources develop and sustain Scleroderma Centers of Excellence, where patients receive the most comprehensive care from clinicians specialized to treat scleroderma and its complications. Within these Centers, clinicians partner with front-line scientists to provide patient samples, as well as providing a place for the next generation of experts to be trained, and developing new treatment strategies to advance standards of care.
THE CONQUER REGISTRY
The Scleroderma Research Foundation began developing the CONQUER Registry in 2013 with the goal of defining the epidemiology of scleroderma in the current era by enrolling a large group of patients and building a powerful database to track them. Data will be collected over the course of the normal clinic visits – ultimately for thousands of patients over many years. The data generated through the CONQUER Registry will allow researchers to refine disease subsets (going beyond “diffuse” and “limited”) and track patient outcomes for each subset with the aim of enabling more precise and tailored care for individual patients.
READ MORE ABOUT THE CONQUER REGISTRY
OUR PROJECTS
INVESTIGATOR
INSTITUTION
RESEARCH PROJECT
Role of CXCR3 Agonists in the Generation of
Franck Barrat, PhD
|
Senior Scientist
Hospital for Special Surgery
Autoreactive B cells in Scleroderma Patients
|
Associate Professor of Immunobiology
Eric Meffre, PhD
Yale School of Medicine
and Medicine
Livia Casciola-Rosen, PhD
| Professor of Medicine
Defining Novel Autoantibodies that are Probes of
Johns Hopkins University School of Medicine
Ami Shah, MD, MHS
| Associate Professor of Medicine
Cancer-Induced Autoimmunity and Risk in Scleroderma
Stanford University School of Medicine
Howard Chang, MD, PhD
| Virginia and D. K. Ludwig Professor
Gene Regulatory Mechanisms in Scleroderma
of Cancer and Genomics; Professor of Dermatology and of
Epigenetics of Sex Differences in Scleroderma
Genetics; Investigator, Howard Hughes Medical Institute
Scleroderma Twin Study
Lorinda Chung, MD, MS
| Associate Professor of Medicine
Stanford University School of Medicine
Stanford Scleroderma Center of Excellence
David Fiorentino,MD, PhD
| Associate Professor of Dermatology
Stanford University School of Medicine,
Lorinda Chung, MD, MS
| Associate Professor of Medicine
Northern California Scleroderma
Paul Wolters, MD
| Professor of Medicine
Research Consortium
University of California, San Francisco
Investigating X-chromosome-related Differences in
Erika Darrah, PhD
| Assistant Professor in Medicine
Johns Hopkins University School of Medicine
Scleroderma
Naturally Presented Topoisomerase Epitopes in
Erika Darrah, PhD
| Assistant Professor in Medicine
Johns Hopkins University School of Medicine
Scleroderma Patients with HLA-DPB1*13:01
Eleni Tiniakou, MD
| Instructor of Medicine
Interrogation of the Pathogenesis of Stiff Skin Syndrome:
Hal Dietz, MD
| Victor A. McKusick Professor of Genetics and Medicine;
Johns Hopkins University School of Medicine
A Congenital Form of Scleroderma
Professor of Pediatrics; Investigator, Howard Hughes Medical Institute
University of Rochester School of
Assessment of the Complement Cascade as a Novel Biomarker,
Benjamin Korman, MD
| Assistant Professor of Medicine
Genetic Risk Factor, and Treatment Target for Scleroderma-
Medicine and Dentistry
Associated Pulmonary Arterial Hypertension (SSc-PAH)
Measuring and Objectively Characterizing Patterns of
Johns Hopkins University School of Medicine
Zsuzsanna McMahan, MD
| Assistant Professor of Medicine
Gastrointestinal Dysmotility in Scleroderma
Zsuzsanna McMahan, MD
| Assistant Professor of Medicine
Identifying Autoantigens in Severe
Jay Pasricha, MD
| Director of the Johns Hopkins Center for
Johns Hopkins University School of Medicine
Gastrointestinal Disease
Neurogastroenterology; Professor of Medicine
Ruslan Medzhitov, PhD
| Sterling Professor of Immunobiology;
Macrophage-Stromal Cell Interactions
Yale School of Medicine
Investigator, Howard Hughes Medical Institute
in Tissue Homeostasis and Fibrosis
Pittsburgh Children’s Hospital
Dr. Kathryn Torok, MD
| Assistant Professor of Medicine
Identification of Novel Pathogenic Genes
Dr. Anne Stevens, MD, PhD
| Professor of Medicine
Seattle Children’s Research Institute
in Juvenile Systemic Sclerosis
Immune Checkpoint Inhibitors as Antifibrotic
Stanford University School of Medicine
Gerlinde Wernig, MD
| Assistant Professor of Pathology
Therapy for Scleroderma
Michael L. Whitfield, PhD
| Interim Chair and Professor of
Geisel School of Medicine at Dartmouth
Molecular Subsets, Integrative Genomics
Biomedical Data Science; Professor of Molecular and Systems
and Tissue Models of Scleroderma
Biology
Fredrick Wigley, MD
| Director, The Johns Hopkins
Johns Hopkins University School of Medicine
Johns Hopkins Scleroderma Center of Excellence
Scleroderma Center; Martha McCrory Professor of Medicine
Fredrick Wigley, MD
| Director, The Johns Hopkins
Genome Research in African American
Johns Hopkins University School of Medicine
Scleroderma Center; Martha McCrory Professor of Medicine
Scleroderma Patients (The GRASP Project)
University of California, San Francisco
Francesco Boin, MD
| Director, UCSF Scleroderma Clinic;
Professor of Medicine
National Human Genome Research Institute
In collaboration with
Dan Kastner, MD, PhD
| Scientific Director of the Instramural
Program at the National Human Genome Research Institute
Scott Zeger, PhD
| Professor of Biostatistics
Antony Rosen, MD
| Vice Dean for Research; Mary Betty
Scleroderma Lung Disease Trajectory Study
Johns Hopkins University School of Medicine
Stevens Professor of Medicine
Livia Casciola-Rosen, PhD
| Professor of Medicine
Laura Hummers, MD, MPH
| Clinical Director, Division of
Rheumatology, Associate Professor of Medicine
Fredrick Wigley, MD
| Director, The Johns Hopkins
Scleroderma Center; Martha McCrory Professor of Medicine
Ami Shah, MD, MHS
| Associate Professor of Medicine
MORE INFORMATION
For more information about the SRF while we build our website,
please view or download our 2018 Annual Report.
DONATE
To make a contribution and support the SRF, donate here.
415.834.9444
220 MONTGOMERY ST., SUITE 484
SAN FRANCISCO, CALIFORNIA 94104