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

Scleroderma: the role of serum autoantibodies in defining specific clinical phenotypes and organ system involvement.

Author: Robyn Domsic
Date Published: September-2014
Source: Current Opinion in Rheumatology

Purpose of review: To discuss recent advances in serologic testing for systemic sclerosis (SSc)-associated antibodies with respect to the diagnosis and prognosis of the disease. Recent findings: The importance of SSc antibodies for diagnosis has become increasingly recognized, as evidenced by incorporation into the 2013 American College of Rheumatology/the European League Against Rheumatism clinical classification criteria for SSc.

Emerging cellular and molecular targets in fibrosis: implications for scleroderma pathogenesis and targeted therapy.

Author: Castelino FV, Varga J.
Date Published: September-2014
Source: Current Opinion in Rheumatology

PURPOSE OF REVIEW: To summarize the recent advances in understanding the novel cytokine pathways, intracellular signaling molecules, cell-fate decisions, cellular aging and senescence, and the cross-talk of effector cells and the extracellular matrix (ECM) in the pathogenesis of systemic sclerosis (SSc) fibrosis. RECENT FINDINGS: Studies from the animal models and human beings implicate novel molecular pathways such as Wnts, the chemokines, chemokine (C-X-C motif) ligand 4 and chemokine (C-C motif) ligand 2, and the lipid mediators lysophosphatidic acid and sphingosine-1-phosphate in the pathogenesis of SSc. These signals, coupled with the mesenchymal cell-fate decisions, contribute to aberrant fibroblast activation and myofibroblast accumulation.

Update on scleroderma-associated interstitial lung disease.

Author: Fan MH, Feghali-Bostwick CA, Silver RM.
Date Published: September-2014
Source: Current Opinion in Rheumatology

PURPOSE OF REVIEW: Systemic sclerosis (SSc), or scleroderma, is a heterogeneous and complex autoimmune disease characterized by varying degrees of skin and organ fibrosis and obliterative vasculopathy. The disease results in significant morbidity and mortality, and to date, available treatments are limited. Lung involvement is the leading cause of death of patients with SSc. Over the past year, significant advances have been made in our understanding of SSc-associated lung disease, and this review attempts to encapsulate these most recent findings and place them in context.

First-Line Combination of Ambrisentan and Tadalafil Reduces Risk of Clinical Failure Compared to Monotherapy in Pulmonary Arterial Hypertension Outcomes Study

Author: Bene MD, Pozzi MR, Rovati L, Mazzola I, Erba G, Bonomi S
Date Published: August-2014
Source: PubMed

Digital ulcers (DUs) occur in up to 50% of patients with Systemic Sclerosis (SSc). DUs are painful, recurring and lead to functional disability. Management of DUs includes pharmacologic and local therapy, the healing process is slow and the ulcer can become infected or evolve to gangrene. Autologous fat grafting (AFG) is a technique used to promote tissues repair. We used AFG to treat DUs refractory to conventional treatment to enhance healing process.

MicroRNAs in Pulmonary Hypertension

Author: Guofei Zhou, Tianji Chen, and J Usha Raj
Date Published: August-2014
Source: ATS Journals

Pulmonary arterial hypertension (PAH) is a devastating disease without effective treatment. Despite decades of research and development of novel treatments, PAH remains a fatal disease, suggesting an urgent need for better understanding of the pathogenesis of PAH. Recent studies suggest that microRNAs (miRNAs) are dysregulated in patients with PAH and in experimental pulmonary hypertension. Furthermore, normalization of a few miRNAs is reported to inhibit experimental pulmonary hypertension.

News for Patients

New Report Identifies Key Features in Systemic Sclerosis

Author: Ana de Barros
Date Published: September-2014
Source: Pulmonary Hypertension News

Systemic sclerosis (SSc) is a disease that affects multiple organs, with the heart being frequently affected and correlating with a poor outcome for the patient. Different heart structures can be affected leading to pericardial disease, arrhythmias, conduction system abnormalities, direct myocardial disease such as pulmonary arterial hypertension, myositis, cardiac failure, cardiac fibrosis, coronary artery diseases and, sometimes, primary valvular involvement. A group of researchers has recently reviewed key studies concerning cardiac arrhythmias and conduction defects in patients suffering from SSc, a wide-ranging report entitled, “Cardiac arrhythmias and conduction defects in systemic sclerosis,” and published in the journal Rheumatology.

The Brighter Side of Living With Chronic Illness: 6 Amazing Things You Know Better Than Most

Author: Lottie V. Ryan
Date Published: October-2014
Source: HuffPost Healthy Living

The diagnosis of any chronic illness comes with much you wish you didn't have to carry, and suffer with, for the rest of your life. You learn the scales of pain, you learn the bureaucracy of the health care system, you learn to grieve for abilities and opportunities lost, and so much more. I know this; I am living with chronic illness too. Yet all is not lost. Your chronic illness also teaches you many great things that offer enormous reward in life, and sometimes it's good to take a moment to acknowledge this brighter side of your existence.

Reversing the effects of pulmonary fibrosis with a microRNA mimic

Author: Jim Shelton
Date Published: September-2014
Source: YaleNews

Yale University researchers are studying a potential new treatment that reverses the effects of pulmonary fibrosis, a respiratory disease in which scars develop in the lungs and severely hamper breathing. The treatment uses a microRNA mimic, miR-29, which is delivered to lung tissue intravenously. In mouse models, miR-29 not only blocked pulmonary fibrosis, it reversed fibrosis after several days. The findings were published Sept. 19 in the journal EMBO Molecular Medicine.

Data on Systemic Sclerosis Drug Candidate To Be Presented at Rare Disease Roundtable

Author: L. Ferreira
Date Published: October-2014
Source: Scleroderma News.com

The chief executive officer of clinical stage biopharmaceutical company Corbus Pharmaceuticals Holdings, Yuval Cohen, Ph.D., is presenting an update on the company’s research, as well as revision of previous clinical developments regarding Corbus’s lead product candidate, Resunab, at the Leerink Partners Rare Disease Roundtable. The product candidate is being studied by the drug developer as a possible treatment for rare, life-threatening inflammatory diseases, such as Systemic Sclerosis and Cystic Fibrosis.

Screening for interstitial lung disease in systemic sclerosis: performance of high-resolution CT with limited number of slices: a prospective study

Author: T. Frauenfelder, A. Winklehner, T. Nguyen, R. Dobrota, S. Baumueller, B. Maurer, O. Distler
Date Published: September-2014
Source: Annals of the Rheumatic Diseases

Early diagnosis of interstitial lung disease (ILD), currently the main cause of death in systemic sclerosis (SSc), is needed. The gold standard is high-resolution CT (HRCT) of the chest, but regular screening faces the risk of increased radiation exposure. We performed a prospective validation of a dedicated, 9-slice HRCT protocol with reduced radiation dose for the detection of ILD in patients with SSc.

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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