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

Joint and tendon involvement predict disease progression in systemic sclerosis: a EUSTAR prospective study

Author: J. Avouac, U. Walker, E. Hachulla, G. Riemekasten, G. Cuomo, et al
Date Published: August-2014
Source: Annals of the Rheumatic Diseases

Objective To determine whether joint synovitis and tendon friction rubs (TFRs) can predict the progression of systemic sclerosis (SSc) over time. Patients and methods We performed a prospective cohort study that included 1301 patients with SSc from the EUSTAR database with disease duration ≤3 years at inclusion and with a follow-up of at least 2 years. Presence or absence at clinical examination of synovitis and TFRs was extracted at baseline. Outcomes were skin, cardiovascular, renal and lung progression. Overall disease progression was defined according to the occurrence of at least one organ progression.

Fat Cell Transplants Boost Hand Function in SSc

Author: Rita Baron-Faust
Date Published: August-2014
Source: Rheumatology Network

Transplanted into their fingers, their own fat cells produce improvements in hand disability, pain, swelling and Raynaud’s phenomenon in as little as two months among patients with scleroderma, according to preliminary results from a small clinical trial in France. In the open-label, single-arm trial, autologous adipose-derived stromal/stem cells (ADSC) were aspirated from the abdomen, purified, and injected into the fingers of 12 women with systemic sclerosis (SSc), with no serious adverse consequences.

Transforming growth factor β—at the centre of systemic sclerosis

Author: Robert Lafyatis
Date Published: August-2014
Source: Nature Reviews Rheumatology

Transforming growth factor β (TGF-β) has long been implicated in fibrotic diseases, including the multisystem fibrotic disease systemic sclerosis (SSc). Expression of TGF-β-regulated genes in fibrotic skin and lungs of patients with SSc correlates with disease activity, which points to this cytokine as the central mediator of pathogenesis. Patients with SSc often develop pulmonary arterial hypertension (PAH), a particularly lethal complication caused by vascular dysfunction.

The role of genetics and epigenetics in the pathogenesis of systemic sclerosis

Author: Jasper C. A. Broen, Timothy R. D. J. Radstake & Marzia Rossato
Date Published: August-2014
Source: Nature Reviews Rheumatology

Systemic sclerosis (SSc) is a complex autoimmune disease of unclear aetiology. A multitude of genetic studies, ranging from candidate-gene studies to genome-wide association studies, have identified a large number of genetic susceptibility factors for SSc and its clinical phenotypes, but the contribution of these factors to disease susceptibility is only modest. However, in an endeavour to explore how the environment might affect genetic susceptibility, epigenetic research into SSc is rapidly expanding.

Lipoic acid plays a role in scleroderma: insights obtained from scleroderma dermal fibroblasts

Author: P. Tsou, B. Balogh, A. Pinney, G. Zakhem, et al
Date Published: August-2014
Source: Arthritis Research & Therapy

Systemic sclerosis (SSc) is a connective tissue disease characterized by fibrosis of the skin and organs. Increase in oxidative stress and platelet-derived growth factor receptor (PDGFR) activation promote collagen I (Col I) production, leading to fibrosis in SSc. Lipoic acid (LA) and its active metabolite dihydrolipoic acid (DHLA) are naturally occurring thiols that act as cofactors and antioxidants, and are produced by lipoic acid synthetase (LIAS). The goal of this study was to examine whether LA and LIAS was deficient in SSc patients and determine the effect of DHLA on the phenotype of SSc dermal fibroblasts.

News for Patients

Joint and tendon involvement predict disease progression in systemic sclerosis: a EUSTAR prospective study

Author: J. Avouac, U. Walker, E. Hachulla, G. Riemekasten, G. Cuomo, et al
Date Published: August-2014
Source: Annals of the Rheumatic Diseases

Objective To determine whether joint synovitis and tendon friction rubs (TFRs) can predict the progression of systemic sclerosis (SSc) over time. Patients and methods We performed a prospective cohort study that included 1301 patients with SSc from the EUSTAR database with disease duration ≤3 years at inclusion and with a follow-up of at least 2 years. Presence or absence at clinical examination of synovitis and TFRs was extracted at baseline. Outcomes were skin, cardiovascular, renal and lung progression. Overall disease progression was defined according to the occurrence of at least one organ progression.

Fat Cell Transplants Boost Hand Function in SSc

Author: Rita Baron-Faust
Date Published: August-2014
Source: Rheumatology Network

Transplanted into their fingers, their own fat cells produce improvements in hand disability, pain, swelling and Raynaud’s phenomenon in as little as two months among patients with scleroderma, according to preliminary results from a small clinical trial in France. In the open-label, single-arm trial, autologous adipose-derived stromal/stem cells (ADSC) were aspirated from the abdomen, purified, and injected into the fingers of 12 women with systemic sclerosis (SSc), with no serious adverse consequences.

4 keys to appealing a rejected insurance claim

Author: Tom Murhpy
Date Published: August-2014
Source: Associated Press

Keep calm and take notes. Stay true to this principle and you can improve your odds of successfully fighting a health insurer's claim rejection. Experts who help with the appeals process say patients have a 50 percent chance or better of prevailing. They say a winning argument may require heavy doses of research and persistence, but the end result is a decision that can stave off thousands of dollars in medical bills.

Sclerosis: Autologous Cell Transfers May Help Patients

Author: Jennifer Garcia
Date Published: August-2014
Source: Medscape Medical News

Injections of autologous stromal vascular fraction (SVF) may improve hand function and decrease pain among patients with systemic sclerosis (SSc), according to a new study published online August 11 in the Annals of the Rheumatic Diseases. The phase 1, open-label study enrolled 12 female patients with SSc and a Cochin Hand Function Scale score higher than 20/90. Patients receiving vasodilator or immunosuppressive therapy in the 3 months before or 6 months after enrollment were excluded from the study. Patients were administered subcutaneous injections of autologous SVF into each finger of both hands and were evaluated over the course of a 6-month period.

Pulmonary Arterial Hypertension Treatment Guidelines: New Answers and Even More Questions

Author: Anna R. Hemnes, MD
Date Published: August-2014
Source: Chest

I vividly remember my first patient with pulmonary arterial hypertension (PAH) during my internship in 1999. We admitted a young woman with pulmonary hypertension, clearly miserable from right-sided heart failure. Although she had been followed in our pulmonary hypertension clinic, there was little to offer her until she clearly required the only medication that was known to be efficacious in patients with PAH at that time: IV epoprostenol.1 Within a few days of starting therapy, she was a new person: walking through the hall, heart failure resolved, and ready to go home to her family.

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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