About Us - The Scleroderma Research Foundation

Research is the key…

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’ve stood firm in our belief that the best way to help scleroderma patients is to fund the most promising medical research aimed at improved therapies and a cure. The SRF is America's largest nonprofit investor in scleroderma research. Patients and their loved ones find hope in the fact the SRF is dedicated exclusively to funding medical research that will help them live longer, fuller lives. Thanks in large part to the SRF and its many generous donors, research and awareness is progressing at a faster pace than ever before.

The SRF funds research investigators at some of the top universities in the United States and abroad, including Dartmouth, Harvard, Johns Hopkins, Royal Free and University College in the UK, Stanford University, Northwestern, Boston University, the University of Michigan, the University of Washington and others. Led by a Scientific Advisory Board comprised of some of the most highly-regarded scientists in the nation, the SRF's research program brings together experts from the fields of immunology and vascular biology as well as cutting-edge technology for the benefit of scleroderma patients.

The SRF is proud to maintain its position as the single largest nonprofit funding source for scleroderma research and devotes a greater percentage of its annual budget to scleroderma research, more than any other nonprofit organization.

Medical research to find better treatments for scleroderma patients is both time-consuming and expensive. Thanks entirely 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 unique collaborative approach conceived by founder Sharon Monsky 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.

Centers of Excellence

As another core feature of its research program, the SRF continues to provide funding to establish and support Scleroderma Centers where clinical research can be advanced. At these Centers, clinicians with large numbers of patients can collaborate with researchers and new scleroderma doctors and specialists can be trained.

Next Generation Investigators

Knowing that future discovery will come from the next generation of scientists, the SRF continues to provide grants to young investigators. Postdoctoral fellowship grants allow researchers to enter the field of scleroderma research and work alongside established investigators. As an indicator of success, several SRF-funded fellows are now dedicating their early careers to the field of scleroderma research.

Annual Scientific Workshop

Each year, the SRF hosts a Scientific Workshop where SRF-funded researchers and leaders from academia and industry engage in high level discussions about the state of scleroderma research. In addition, the SRF supports important educational initiatives such as the International Scleroderma Workshop. Collectively, these programs promote the sharing of ideas and new discoveries that further progress toward a cure.

Current IRS Form 990 and audited financial statements are available for review as Adobe PDF downloads in the Legal Notices and Privacy Information section of this website.

The continued success of the SRF research program is entirely dependent upon charitable gifts. These gifts come in many forms from generous people around the world who recognize that the SRF is dedicated to solving the mystery of scleroderma.

The SRF administrative offices are led by:

Amy Hewitt
Executive Director

Alex Gonzalez
Director of Development

Brendan Doherty
Director of Communications

 

 
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Research News

Experimental Compound Shows Promise in Reversing Skin Disease Associated with Systemic Sclerosis

Author: Collee Labbe
Date Published: January-2016
Source: NIAMS Spotlight on Research

A new drug appears to alter the expression of certain genes associated with systemic sclerosis by blocking a key protein, and also leads to clinical improvements in the skin, according to a study funded in part by the NIH’s National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS). The study was published in the Journal of Clinical Investigation. Systemic sclerosis, a severe form of scleroderma, is a chronic connective tissue disease that affects multiple organs and tissues in the body. It can lead to fibrosis, or hardening, of the skin and other organs such as the lungs, kidneys and heart. Currently, no effective treatments exist. Because the disease affects everyone differently, finding therapies has been challenging.

SteadyMed’s Treyvent Awarded Orphan Drug Designation from FDA

Author: Dainela Semedo
Date Published: January-2016
Source: Pulmonary Hypertension News

SteadyMed, Ltd., a company that develops products to treat orphan and high-value conditions with unmet parenteral delivery needs, recently announced that its lead product candidate, Trevyent® has been granted Orphan Drug Designation by the U.S. Food and Drug Administration (FDA) for the treatment of pulmonary arterial hypertension (PAH).

Idiopathic Pulmonary Fibrosis Drugs Makes Inroads in Systemic Sclerosis Market

Author:
Date Published: January-2016
Source: Clinical Trials Arena

Pharmaceutical giant, Boehringer Ingelheim (BI), is poised to begin a Phase III trial of its idiopathic pulmonary fibrosis (IPF) drug, Ofev (nintedanib) as a treatment for systemic sclerosis-related interstitial lung disease (SSc-ILD). Ofev initially gained approval by the Food and Drug Administration (FDA) in October 2014 and by the European Medicines Agency (EMA) in January 2015. Roche and Genentech's Esbriet, arguably BI's closest competitor in the field, is more widely known than Ofev. Despite being available in Europe since 2011, Esbriet gained FDA approval on the same day as Ofev.

EADV: Fresolimumab shows early promise in scleroderma

Author: Bruce Jancin
Date Published: December-2015
Source: Rheumatology News

The recent success of fresolimumab in treating early diffuse cutaneous systemic sclerosis in a proof-of-concept study signals better days ahead in the treatment of scleroderma, Dr. Thomas Krieg predicted at the annual congress of the European Academy of Dermatology and Venereology. “There will be new and better treatments based upon our improved understanding of the pathophysiology of this complex multifaceted disease. New targeted therapies are likely,” according to Dr. Krieg, chairman of the department of dermatology and venereology and dean of the medical faculty at the University of Cologne (Germany).

Recent developments in the classification, evaluation, pathophysiology, and management of scleroderma renal crisis

Author: Cybele Ghossein, John Varga, Andrew Z. Fenves
Date Published: December-2015
Source: Current Rheumatology Reports

Scleroderma renal crisis (SRC) is an uncommon complication of systemic sclerosis. Despite the advent of angiotensin-converting inhibitor therapy, SRC remains a life-threatening complication. Recent studies have contributed to a better understanding of SRC, but much remains unknown regarding its pathophysiology, risk factors, and optimal management. Genetic studies provide evidence that immune dysregulation might be a contributing factor, providing hope that further research in this direction might illuminate pathogenesis and provide novel predictors for this complication.

News for Patients

Experimental Compound Shows Promise in Reversing Skin Disease Associated with Systemic Sclerosis

Author: Collee Labbe
Date Published: January-2016
Source: NIAMS Spotlight on Research

A new drug appears to alter the expression of certain genes associated with systemic sclerosis by blocking a key protein, and also leads to clinical improvements in the skin, according to a study funded in part by the NIH’s National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS). The study was published in the Journal of Clinical Investigation. Systemic sclerosis, a severe form of scleroderma, is a chronic connective tissue disease that affects multiple organs and tissues in the body. It can lead to fibrosis, or hardening, of the skin and other organs such as the lungs, kidneys and heart. Currently, no effective treatments exist. Because the disease affects everyone differently, finding therapies has been challenging.

SteadyMed’s Treyvent Awarded Orphan Drug Designation from FDA

Author: Dainela Semedo
Date Published: January-2016
Source: Pulmonary Hypertension News

SteadyMed, Ltd., a company that develops products to treat orphan and high-value conditions with unmet parenteral delivery needs, recently announced that its lead product candidate, Trevyent® has been granted Orphan Drug Designation by the U.S. Food and Drug Administration (FDA) for the treatment of pulmonary arterial hypertension (PAH).

Idiopathic Pulmonary Fibrosis Drugs Makes Inroads in Systemic Sclerosis Market

Author:
Date Published: January-2016
Source: Clinical Trials Arena

Pharmaceutical giant, Boehringer Ingelheim (BI), is poised to begin a Phase III trial of its idiopathic pulmonary fibrosis (IPF) drug, Ofev (nintedanib) as a treatment for systemic sclerosis-related interstitial lung disease (SSc-ILD). Ofev initially gained approval by the Food and Drug Administration (FDA) in October 2014 and by the European Medicines Agency (EMA) in January 2015. Roche and Genentech's Esbriet, arguably BI's closest competitor in the field, is more widely known than Ofev. Despite being available in Europe since 2011, Esbriet gained FDA approval on the same day as Ofev.

EADV: Fresolimumab shows early promise in scleroderma

Author: Bruce Jancin
Date Published: December-2015
Source: Rheumatology News

The recent success of fresolimumab in treating early diffuse cutaneous systemic sclerosis in a proof-of-concept study signals better days ahead in the treatment of scleroderma, Dr. Thomas Krieg predicted at the annual congress of the European Academy of Dermatology and Venereology. “There will be new and better treatments based upon our improved understanding of the pathophysiology of this complex multifaceted disease. New targeted therapies are likely,” according to Dr. Krieg, chairman of the department of dermatology and venereology and dean of the medical faculty at the University of Cologne (Germany).

Recent developments in the classification, evaluation, pathophysiology, and management of scleroderma renal crisis

Author: Cybele Ghossein, John Varga, Andrew Z. Fenves
Date Published: December-2015
Source: Current Rheumatology Reports

Scleroderma renal crisis (SRC) is an uncommon complication of systemic sclerosis. Despite the advent of angiotensin-converting inhibitor therapy, SRC remains a life-threatening complication. Recent studies have contributed to a better understanding of SRC, but much remains unknown regarding its pathophysiology, risk factors, and optimal management. Genetic studies provide evidence that immune dysregulation might be a contributing factor, providing hope that further research in this direction might illuminate pathogenesis and provide novel predictors for this complication.

Ways to Give

There are many ways that you can support the work of the Scleroderma Research Foundation. We are grateful for your commitment to helping the SRF fund research that will result in improved therapies and, ultimately, a cure.

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