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

Charles Spaulding
Vice President, Communications

Alex Gonzalez
Director of Development

 

 
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Research News

Review: Cancer-Induced Autoimmunity in the Rheumatic Diseases

Author: Ami A. Shah, Livia Casciola-Rosen and Antony Rosen
Date Published: January-2015
Source: Arthritis & Rheumatology

Tantalizing connections between autoimmune rheumatic diseases and cancer have become increasingly evident over the past several decades. These connections are complex, with different relationships in frequency, timing, and types of cancers observed in different diseases or disease subgroups. Several recent advances from disparate fields have begun to illuminate the dynamic and bidirectional interactions occurring at the cancer–immune system interface which may be relevant to understanding the origins of autoimmunity ([1]). These interactions include the existence of potent anticancer immune responses that limit tumor growth, as well as multiple immune and inflammatory pathways that can contribute to tumor growth and robustness. The striking ability of immune checkpoint inhibitors to reveal powerful anticancer immune responses in patients with cancer highlights the fact that natural immune responses to cancers occur, and may regulate the emergence of cancer ([2]).

Autologous Fat Grafting in the Treatment of Fibrotic Perioral Changes in Patients With Systemic Sclerosis

Author: Del Papa, Nicoletta; Caviggioli, Fabio; Sambataro, Domenico; et al
Date Published: January-2015
Source: Cell Transplantation

Autologous fat tissue grafting (AFTG) has been successfully used in the treatment of different sclerotic conditions, including localized scleroderma. Patients with advanced systemic sclerosis (SSc)-related perioral thickening and mouth opening limitation are candidates for this therapeutic approach. AFTG of the lips was performed to improve mouth opening in patients with SSc. We enrolled in the study 20 female patients with diffuse SSc (median age 35 ± 15 years and 11 ± 10 years of disease duration). Two-milliliter fractions of autologous fat drawn from trochanteric or periumbilical areas were injected in eight different sites around the mouth.

Impaired BMPRII Signalling in a TGFβ Dependent Mouse Model of Pulmonary Hypertension and in Systemic Sclerosis.

Author: A. Gilbane, E. Derrett-Smith, S. Trinder, R. Good, A. Pearce , C. Denton , and A. Holmes
Date Published: January-2015
Source: American Journal of Respiratory and Critical Care Medicine

Rationale: Up to 10 percent of systemic sclerosis (SSc) patients develop pulmonary arterial hypertension (PAH). This risk persists throughout the disease and is time-dependent, suggesting that SSc is a susceptibility factor. Outcome for SSc-PAH is poor compared with heritable (hPAH) or idiopathic (iPAH) forms, despite clinical and pathological similarities. Whereas susceptibility in hPAH and iPAH is strongly associated with gene mutations leading to reduced expression of bone morphogenetic protein type II receptor (BMPRII), these mutations have not been observed in SSc-PAH.

Clinical Trial for MEDI-551 in Scleroderma Completed

Author: Mahoney JM, Taroni J, Martyanov V, Wood TA, Greene CS, Pioli PA, Hinchcliff ME, Whitfield ML
Date Published: January-2015
Source: PLoS One

Systemic sclerosis (SSc) is a rare systemic autoimmune disease characterized by skin and organ fibrosis. The pathogenesis of SSc and its progression are poorly understood. The SSc intrinsic gene expression subsets (inflammatory, fibroproliferative, normal-like, and limited) are observed in multiple clinical cohorts of patients with SSc. Analysis of longitudinal skin biopsies suggests that a patient's subset assignment is stable over 6-12 months. Genetically, SSc is multi-factorial with many genetic risk loci for SSc generally and for specific clinical manifestations.

Serum adhesion molecule levels as prognostic markers in patients with early systemic sclerosis: a multicentre, prospective, observational study.

Author: Hasegawa M, Asano Y, Endo H, Fujimoto M, Goto D, Ihn H
Date Published: January-2015
Source: PLoS One

To assess the utility of circulating adhesion molecule levels as a prognostic indicator of disease progression in systemic sclerosis (SSc) patients with early onset disease. METHODS: Ninety-two Japanese patients with early onset SSc presenting with diffuse skin sclerosis and/or interstitial lung disease were registered in a multicentre, observational study. Concentrations of intercellular adhesion molecule (ICAM) -1, E-selectin, L-selectin, and P-selectin in serum samples from all patients were measured by enzyme-linked immunosorbent asssay (ELISA). In 39 patients, adhesion molecule levels were measured each year for four years. The ability of baseline adhesion molecule levels to predict subsequent progression and severity in clinical and laboratory features were evaluated statistically.

News for Patients

SSc Patients May Improve with Grafts of Their Own Fat

Author: Alisa Woods
Date Published: January-2015
Source: Scleroderma News

Italian scientists may have identified a way to improve systemic sclerosis (SSc) symptoms with fat grafts. A recent study titled “Autologous Fat Grafting in the Treatment of Fibrotic Perioral Changes in Patients with Systemic Sclerosis” published in the journal Cell Transplantation showed that the fat grafts improved mouth movement, improved blood vessel regrowth, and helped to restore the skin.

DETECT, ASIG Algorithms Outperform ESC/ERS Guidelines for Pulmonary Arterial Hypertension in Systemic Sclerosis

Author: Daniela Semedo
Date Published: January-2015
Source: Scleroderma News

Systemic sclerosis (SSc) is a multisystem connective tissue disease characterized by vasculopathy and fibrosis. Pulmonary arterial hypertension (PAH) is one of the most severe organ complications and a leading cause of death in SSc. Estimations are that patients with SSc that have associated PAH have a 3-year survival of just 50%. Since early identification has been found to improve the outcome, researchers have been working on pinpointing the optimal care management for patients with SSc.

Genetic Markers Aid in Tracking CVD Risk in SSc - Two markers appear to be useful for identifying SSc patients at risk for pulmonary hypertension.

Author: Diana Swift
Date Published: January-2015
Source: MedPage Today

Patients with systemic sclerosis (SSc) who are free of traditional cardiovascular risk factors can still have increased levels of two biomarkers indicative of myocyte injury: high-sensitivity cardiac troponin (HS-cTnT) and N-terminal fragment of pro-brain natriuretic peptide (NT-proBNP). "Elevated levels of these markers may reflect subclinical myocardial damage and dysfunction caused by the disease [SSc] itself," wrote French investigators online in Arthritis Care and Research.

Is Rituximab Ready for Prime Time in SSc? Experts: new data support rituximab for reducing lung fibrosis in systemic sclerosis.

Author: Diana Swift
Date Published: January-2015
Source: MedPage Today

B-cell depletion via rituximab (Rituxan) infusion reduced the progression of skin thickening and lung fibrosis in systemic sclerosis (SSc), according to a review article, and clinicians need to consider rituximab therapy in these patients. Fiona McQueen, MD, of the University of Auckland, and Kamal Solanki, MD, of Waikato Hospital in Hamilton, both in New Zealand, looked at observational, case-control data from the European League Against Rheumatism Scleroderma Trials and Research (EUSTAR) group and summarized their findings in Rheumatology.

ASSET (Abatacept Systemic SclErosis Trial)

Author:
Date Published: January-2015
Source: University of Michigan Scleroderma Program

ASSET (Abatacept Systemic SclErosis Trial) is an international, placebo-controlled, double blind, randomized trial of early diffuse cutaneous systemic sclerosis (SSc). This trial assesses abatacept (Orencia®, a recombinant fusion protein consisting of the extracellular domain of human CTLA4 is FDA approved biologic medication for rheumatoid arthritis and juvenile arthritis) in patients with early diffuse SSc with less than or equal to 36 months.

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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