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

 

 

 

 

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

 

 

 

 

 

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 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

Eric Meffre, PhD

|

Associate Professor of Immunobiology

Yale School of Medicine

and Medicine

Defining Novel Antibodies that are Probes of

Cancer-Induced Autoimmunity and

Risk in Scleroderma

| Professor of Medicine

Livia Casciola-Rosen, PhD

Johns Hopkins University School of Medicine

Ami Shah, MD, MHS

| Associate Professor of Medicine

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

| Associate Professor of Medicine

Stanford University School of Medicine

Lorinda Chung, MD, MS

Stanford Scleroderma Center of Excellence

| Associate Professor of Dermatology

David Fiorentino,MD, PhD

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

Scleroderma

Johns Hopkins University School of Medicine

Erika Darrah, PhD

| Assistant Professor in Medicine

Naturally Presented Topoisomerase Epitopes in

Johns Hopkins University School of Medicine

Erika Darrah, PhD

| Assistant Professor in Medicine

Scleroderma Patients with HLA-DPB1*13:01

Eleni Tiniakou, MD

| Instructor of Medicine

Hal Dietz, MD

| Victor A. McKusick Professor of Genetics and Medicine;

Interrogation of the Pathogenesis of Stiff Skin Syndrome

A Congenital Form of Scleroderma

Johns Hopkins University School of Medicine

Professor of Pediatrics; Investigator, Howard Hughes Medical Institute

Assessment of the Complement Cascade as a Novel Biomarker,

University of Rochester School of

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 Gastrointestinal

| Assistant Professor of Medicine

Johns Hopkins University School of Medicine

Zsuzsanna McMahan, MD

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

Y

ale School of Medicine

Investigator, Howard Hughes Medical Institute

in Tissue Homeostasis and Fibrosis

Pittsburgh Children’s Hospital

Identification of Novel Pathogenic Genes

in Juvenile Systemic Sclerosis

Dr. Kathryn Torok, MD

| Assistant Professor of Medicine

Dr. Anne Stevens, MD, PhD

| Professor of Medicine

Seattle Childrens Research Institute

Immune Checkpoint Inhibitors as Antifibrotic

Therapy for Scleroderma

| Assistant Professor of Pathology

Stanford University School of Medicine

Gerlinde Wernig, MD

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

Genome Research in African American

Fredrick Wigley, MD

| Director, The Johns Hopkins

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;

National Human Genome Research Institute

Professor of Medicine

In collaboration with

Dan Kastner, MD, PhD

| Scientific Director of the Intramural Program

Program at the National Human Genome Research Institute

Scott Zeger, PhD

| Professor of Biostatistics

Scleroderma Lung Disease Trajectory Study

Johns Hopkins University School of Medicine

Antony Rosen, MD

| Vice Dean for Research; Mary Betty

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.