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

Endocan, Novel Potential Biomarker for Systemic Sclerosis: Results of a Pilot Study

Author: Paul Bălănescu, Anca Lădaru, Eugenia Bălănescu, Theodor Voiosu, Cristian Băicuş and Gheorghe Andrei Dan
Date Published: September-2015
Source: Journal of Clinical Laboratory Analysis

Systemic sclerosis (Ssc) is an autoimmune disease characterized by vascular alterations of small arteries and microvessels with subsequent tissue fibrosis. Endocan is expressed by endothelial cells and associated with endothelial dysfunction; therefore it could be a potential biomarker for Ssc patients.

Associations between circulating endostatin levels and vascular organ damage in systemic sclerosis and mixed connective tissue disease: an observational study

Author: Silje Reiseter,corresponding author Øyvind Molberg, Ragnar Gunnarsson, et al
Date Published: August-2015
Source: Arthritis Research & Therapy

Systemic sclerosis (SSc) and mixed connective tissue disease (MCTD) are chronic immune-mediated disorders complicated by vascular organ damage. The aim of this study was to examine the serum levels of the markers of neoangiogenesis: endostatin and vascular endothelial growth factor (VEGF), in our unselected cohorts of SSc and MCTD.

Type 2 innate lymphoid cell counts are increased in patients with systemic sclerosis and correlate with the extent of fibrosis

Author: Thomas Wohlfahrt, Svetlana Usherenko, Matthias Englbrecht, et al
Date Published: September-2015
Source: Annals of the Rheumatic Diseases

Type 2 innate lymphoid cells (ILC2s), a recently identified population of lymphoid cells lacking lineage-specific receptors, promote type 2 immunity and tissue remodelling. However, the contributive role of ILC2s in the pathogenesis of systemic sclerosis (SSc) is unknown. We aimed to evaluate the levels and correlations with fibrotic manifestations in SSc.

Influence of TYK2 in systemic sclerosis susceptibility: a new locus in the IL-12 pathway

Author: Elena López-Isac, Diana Campillo-Davo, Lara Bossini-Castillo, et al
Date Published: September-2015
Source: Annals of the Rheumatic Diseases

TYK2 is a common genetic risk factor for several autoimmune diseases. This gene encodes a protein kinase involved in interleukin 12 (IL-12) pathway, which is a well-known player in the pathogenesis of systemic sclerosis (SSc). Therefore, we aimed to assess the possible role of this locus in SSc.

Molecular characterization of systemic sclerosis esophageal pathology identifies inflammatory and proliferative signatures

Author: J. Taroni, V. Martyanov, C. Huang, J. Mahoney, et al
Date Published: July-2015
Source: Arthritis Research & Therapy

Esophageal involvement in patients with systemic sclerosis (SSc) is common, but tissue-specific pathological mechanisms are poorly understood. There are no animal scleroderma esophagus models and esophageal smooth muscle cells dedifferentiate in culture prohibiting in vitro studies. Esophageal fibrosis is thought to disrupt smooth muscle function and lead to esophageal dilatation, but autopsy studies demonstrate esophageal smooth muscle atrophy and the absence of fibrosis in the majority of SSc cases. Herein, we perform a detailed characterization of SSc esophageal histopathology and molecular signatures at the level of gene expression.

News for Patients

The Annual Review: Systemic Sclerosis Research

Author: Norman Bauman
Date Published: September-2015
Source: The Rheumatology Network

There have been many developments in the treatment of systemic sclerosis throughout the last year. Researchers continue to explore the possibility of genetic influences in disease progression and the role of SSc antibodies for diagnosis. New criteria has been proposed for Very Early Disease Onset Systemic Sclerosis. These and other developments have led to improvements in disease control and a better quality of life for patients who live with systemic sclerosis, also known as systemic scleroderma.

Relationship between Body Mass Composition, Bone Mineral Density, Skin Fibrosis and 25(OH) Vitamin D Serum Levels in Systemic Sclerosis

Author: A. Corrado, R. Colia, A. Mele, V. Di Bello, A. Trotta, A. Neve, F. Paolo Cantatore
Date Published: September-2015
Source: PLOS One

Systemic sclerosis (SSc) is a rare chronic autoimmune disease characterised by an increased synthesis and deposition of extra-cellular matrix in skin and internal organs and widespread macro and micro- vascular damage. Depending on the extent of skin fibrosis, SSc can be classified in two main subtypes, the limited cutaneous form (lcSSc) and the diffuse cutaneous form (dcSSc) [1].

RayVa Topical Treatment Safe and Effective in Phase 2a SCL-Related Raynaud’s Phenomenon Trial from Apricus

Author: Maureen Newman
Date Published: September-2015
Source: Scleroderma News

Top-line results from the Apricus Biosciences, Inc. Phase 2a clinical trial for RayVa™ topical treatment in patients with scleroderma-related Raynaud’s phenomenon indicate the treatment is safe and effective. Patients tolerated treatment and reported a noticeable change in the way their skin temperature responded to a cold challenge. There are now plans to advance to a later stage Phase 2 clinical trial in 2016.

PAH Clinical Trial Designs Are Evolving, Paving the Way Toward Improved Therapies

Author: Maureen Newman
Date Published: September-2015
Source: Pulmonary Hypertension News

The recent announcement of positive results for the AMBITION trial testing combinatorial ambrisentan and tadalafil in patients with pulmonary arterial hypertension (PAH) is bringing more attention to the need to actively recruit participants for clinical trials. Without patients and clinicians interested in trying new treatments for a currently incurable condition, promising new therapies cannot be brought to market for the general PAH population.

PFTs Often Miss Lung Disease in Scleroderma

Author: Wayne Kuznar
Date Published: September-2015
Source: MedPage Today

Pulmonary function tests (PFTs) are not reliable for the detection of scleroderma interstitial lung disease (SSc-ILD), results of a prospective cohort study suggested. An international team of researchers found that only one-fourth of patients with scleroderma had a forced vital capacity (FVC) <80% and only about half had an abnormally low value in at least one PFT. Further, almost two-thirds of patients with significant ILD on high-resolution computed tomography (CT) had a normal FVC.

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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