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 medical research aimed at improved therapies and a cure. Today, we are the nation’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 country, 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 continues to lead the way in funding scleroderma research. It has maintained 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. In the fiscal year ending 2013, the SRF funded more than $1,000,000 in direct research grants.

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 SRF’s 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.

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.

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.

Each year, the SRF hosts a Scientific Workshop where SRF-funded researchers and other investigators 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 lead staff are:

Alex Gonzalez
Director of Development

Amy Hewitt
Executive Director

Charles Spaulding
Vice President, Communications

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Research News

Benzimidazoisoquinolines: A New Class of Rapidly Metabolized Aryl Hydrocarbon Receptor (AhR) Ligands that Induce AhR-Dependent Tregs and Prevent Murine Graft-Versus-Host Disease

Author: Sumit Punj, Prasad Kopparapu, Hyo Sang Jang, et al
Date Published: February-2014
Source: PLoS One

The aryl hydrocarbon receptor (AhR) is a ligand-activated transcription factor that plays multiple roles in regulation of immune and inflammatory responses. The ability of certain AhR ligands to induce regulatory T cells (Tregs) has generated interest in developing AhR ligands for therapeutic treatment of immune-mediated diseases. To this end, we designed a screen for novel Treg-inducing compounds based on our understanding of the mechanisms of Treg induction by the well-characterized immunosuppressive AhR ligand, 2,3,7,8-tetrachlorodibenzo-p-dioxin (TCDD).

Early- versus Late-Onset Systemic Sclerosis: Differences in Clinical Presentation and Outcome in 1037 Patients

Author: Alba, Marco A. MD; Velasco, César MD; Simeón, Carmen Pilar MD; et al
Date Published: March-2014
Source: Medicine

Peak age at onset of systemic sclerosis (SSc) is between 20 and 50 years, although SSc is also described in both young and elderly patients. We conducted the present study to determine if age at disease onset modulates the clinical characteristics and outcome of SSc patients. The Spanish Scleroderma Study Group recruited 1037 patients with a mean follow-up of 5.2 ± 6.8 years. .

Increased intrarenal arterial stiffness may predict the occurrence of new digital ulcers in systemic sclerosis.

Author: Rosato E, Barbano B, Gigante A, Molinaro I, et al
Date Published: March-2014
Source: Arthritis Care & Research

Abstract Objective. Patients with SSc are at high risk for the development of ischaemic digital ulcers (DUs), which occur in 35% to 60% of SSc patients. The aim of this study was to asses in SSc patients a correlation between intrarenal arterial stiffness and DUs and to evaluate the prognostic value of Doppler indices to predict the new DUs occurrence. Methods. Seventy (58 female and 12 male; mean age 49,5±13,8 years) unselected, consecutive patients with SSc were enrolled. In all patient Doppler ultrasound examination was performed. The following Doppler indices of intrarenal stiffness were measured: peak systolic velocity (PSV), end diastolic velocity (EDV), resistive index (RI), pulsatile index (PI), systolic/diastolic ratio (S/D).

Faecal levels of calprotectin in systemic sclerosis are stable over time and are higher compared to primary Sjogren's syndrome and rheumatoid arthritis.

Author: Andréasson K, Saxne T, Scheja A, Bartosik I, et al
Date Published: February-2014
Source: Arthritis Research & Therapy

Abstract INTRODUCTION: Faecal calprotectin (FC) has been proposed to be a biomarker of gastrointestinal (GI) disease in systemic sclerosis (SSc). The purpose of this study was to extend cross-sectional observations and prospectively assess the variability of FC over time in SSc patients. We also aimed to examine FC in relation to immunosuppressive therapy. Finally we wanted to analyse FC in other rheumatic diseases to evaluate the specificity of FC for SSc GI disease.

Clinical and serological correlates of anti-PM/Scl antibodies in systemic sclerosis: A multicenter study of 763 patients.

Author: D'Aoust J, Hudson M, Tatibouet S, Wick J; Canadian Scleroderma Research Group (CSRG) et al
Date Published: February-2014
Source: Arthritis & Rheumatology

Abstract Background Anti-PM/Scl autoantibodies are found in polymyositis (PM), dermatomyositis (DM), systemic sclerosis (SSc), and systemic autoimmune rheumatic disease overlap syndromes. PM1-Alpha is a major epitope of the PM/Scl complex and antibodies against PM1-Alpha can be detected using a validated ELISA. This study was undertaken to determine the prevalence and identify the clinical correlates of anti-PM1-Alpha antibodies in a large SSc cohort. Methods The sera of 763 SSc subjects enrolled in a Canadian multi-centre cohort were analyzed for the presence of antibodies against PM1-Alpha by ELISA. Associations between the presence of anti-PM1-Alpha antibodies and demographic, clinical and other serological manifestations of SSc were investigated.

News for Patients

Big pharma plus big data could equal big savings

Author: Shu Zhang
Date Published: March-2014
Source: MedILL Reports Chicago

Fifteen percent of Netflix Inc.’s 44.4 million global subscribers watched the second season of “House of Cards” the day it went live. But Netflix wasn’t surprised. Before it invested in the series, a Venn diagram of viewers’ watching preferences had already predicted a series directed by David Fincher, starring Kevin Spacey and based on a British TV series would hit the sweet spot. The data mining technique Netflix used relies on “big data,” a fairly recent buzzword. Predictions based on big data analysis are being made in the stock market, the auto market, at the box office and in political elections.

Upfront triple combination therapy in pulmonary arterial hypertension: a pilot study.

Author: Sitbon O, Jays X, Savale L, Cottin V, et al
Date Published: March-2014
Source: The European Respiratory Journal

Abstract - Patients with severe pulmonary arterial hypertension (PAH) in New York Heart Association (NYHA) functional class (FC) III/IV have a poor prognosis, despite survival benefits being demonstrated with intravenous epoprostenol. In this pilot study, the efficacy and safety of a triple combination therapy regimen in patients with severe PAH was investigated.Data from newly diagnosed NYHA FC III/IV PAH patients (n = 19) initiated on upfront triple combination therapy (intravenous epoprostenol, bosentan and sildenafil) were collected retrospectively from a prospective registry.

How Age Alters the Appearance of Scleroderma

Author: Norman Bauman
Date Published: March-2014
Source: Rheumatology Network

In systemic sclerosis, age at disease onset is associated with differences in clinical presentation and outcome. The Spanish Scleroderma Study Group followed 1,037 patients for a mean followup of five years. The investigators compared the initial and cumulative manifestations, immunologic features, and death rates for three age groups at onset: early standard, and late. Standardized mortality was higher in younger patients. The article contains far more detail about symptoms and outcomes than those included in the chart below.

New Antibody Shows Promise in Lupus

Author: Nancy Walsh
Date Published: March-2014
Source: MedPage Today

Initial clinical studies of epratuzumab in patients with active, moderate-to-severe systemic lupus erythematosus (SLE) are suggesting promise for this monoclonal antibody. In an exploratory analysis of a 12-week phase IIb study, patients who received four weekly 600 mg doses of epratuzumab were three times more likely to show a response than those given placebo (OR 3.2, 95% CI 1.1-8.8, P=0.03), according to Daniel J. Wallace, MD, of the University of California Los Angeles, and colleagues.

OSU Finds New Compound That Could Treat Autoimmune Diseases

Author: Staff Editor
Date Published: March-2014
Source: HealthNewsDigest.com

CORVALLIS, Ore. - Scientists at Oregon State University have discovered a chemical compound that could be a safer alternative for treating autoimmune diseases. Although studies in humans are still needed, the finding could bring hope to people suffering from conditions caused by their immune system attacking their bodies. Autoimmune diseases can affect almost any part of the body resulting in diseases such as colitis, multiple sclerosis and psoriasis. "We mostly treat autoimmune diseases with high-dose corticosteroids or cytotoxic drugs to suppress the immune response, and the side effects can be very difficult to deal with," said lead researcher Nancy Kerkvliet. "But if this chemical works in clinical studies, it could result in a safer alternative to conventional drugs."

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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