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

Severity of Systemic Sclerosis-Associated Pulmonary Arterial Hypertension in African Americans

Author: Blanco, I. MD, PhD; Mathai, S. MD, MHS; Shafiq, M. MD; et al
Date Published: July-2014
Source: Medicine

African Americans (AA) with systemic sclerosis (SSc) have a worse prognosis compared to Americans of European descent (EA). We conducted the current study to test the hypothesis that AA patients with SSc have more severe disease and poorer outcomes compared to EA patients when afflicted with pulmonary arterial hypertension (PAH). We studied 160 consecutive SSc patients with PAH diagnosed by right heart catheterization, comparing demographics, hemodynamics, and outcomes between AA and EA patients.

Emerging role of epigenetics in systemic sclerosis pathogenesis

Author: M. Ciechomska, J. M. van Laar and S. O'Reilly
Date Published: June-2014
Source: Nature Genes & Immunity

Systemic sclerosis is a connective tissue disease of unknown aetiology characterised by autoimmunity, inflammation, vascular abnormalities and ultimately fibrosis. Although great advances have been made in determining the molecular mechanisms of disease pathogenesis over the last decade, aided by new genetic screens, no current specific disease-modifying treatment is yet available. Epigenetics is defined as heritable changes that are not due to changes in DNA sequence, and there is at present intense research effort to understand the basic mechanisms of epigenetic regulation and how these impact diseases.

TREG-cell therapies for autoimmune rheumatic diseases

Author: Makoto Miyara, Yoshinaga Ito & Shimon Sakaguchi
Date Published: July-2014
Source: Nature Reviews Rheumatology

Naturally occurring Foxp3+CD25+CD4+ regulatory T (TREG) cells maintain immunological self-tolerance and prevent a variety of autoimmune diseases, including rheumatic diseases such as rheumatoid arthritis and systemic lupus erythematosus. In animal models of rheumatic disease, autoimmune responses can be controlled by re-establishing the T-cell balance in favour of TREG cells. Here we discuss three potential strategies for the clinical use of TREG cells to treat autoimmune rheumatic disease: expansion of self-antigen-specific natural TREG cells in vivo; propagation of antigen-specific natural TREG cells ex vivo, by in vitro antigenic stimulation, and subsequent transfer back into the host;

Hidden Origins Of Pulmonary Hypertension Revealed By Network Modeling

Author: Brigham and Women’s Hospital
Date Published: June-2014
Source: Red Orbit

In a groundbreaking study, researchers from Brigham and Women’s Hospital (BWH) have identified a related family of molecules believed to be a major root cause of pulmonary hypertension, a deadly vascular disease with undefined origins. This is one of the first studies to leverage advanced computational network modeling to decipher the molecular secrets of this complex human disease. The study is published online June 24, 2014 in The Journal of Clinical Investigation.

Taking charge of systemic sclerosis: a pilot study to assess the effectiveness of an internet self-management program.

Author: Poole JL, Mendelson C, Skipper B, Khanna D.
Date Published: May-2014
Source: Arthritis Care & Research

Abstract - OBJECTIVE: To assess the effects of an internet self-management program for systemic sclerosis on self-efficacy, health efficacy, and management of care, pain, fatigue, functional ability, and depression. METHODS: Participants logged on to a password-protected web site and completed modules and learning activities at their own pace over 10 weeks. Participants were encouraged to log on to the discussion board, participate in an interactive component of the web site, and respond to questions posted for each module. Participants completed pre- and postintervention questionnaires on perceived self-efficacy, health efficacy, ability to manage care, functional disability,depression, pain, and fatigue. They also completed an 8-question evaluation form regarding satisfaction with the web site, program content, discussion boards, and learning activities.

News for Patients

Severity of Systemic Sclerosis-Associated Pulmonary Arterial Hypertension in African Americans

Author: Blanco, I. MD, PhD; Mathai, S. MD, MHS; Shafiq, M. MD; et al
Date Published: July-2014
Source: Medicine

African Americans (AA) with systemic sclerosis (SSc) have a worse prognosis compared to Americans of European descent (EA). We conducted the current study to test the hypothesis that AA patients with SSc have more severe disease and poorer outcomes compared to EA patients when afflicted with pulmonary arterial hypertension (PAH). We studied 160 consecutive SSc patients with PAH diagnosed by right heart catheterization, comparing demographics, hemodynamics, and outcomes between AA and EA patients.

Health Insurance Claim Denied? Appeal!

Author: Chris Kissell
Date Published: June-2014
Source: Fox Business

Few things are scarier than racking up medical bills and then learning that your health insurance company won't pay. It's a nightmare that could panic any policyholder. But before you worry about sinking into a black hole of medical debt, know that federal law offers a way to appeal. "When a claim is denied, consumers should not view that as the end of the story," says Katherine Vukadin, an assistant professor at Texas Southern University's Thurgood Marshall School of Law in Houston.

Emerging role of epigenetics in systemic sclerosis pathogenesis

Author: M. Ciechomska, J. M. van Laar and S. O'Reilly
Date Published: June-2014
Source: Nature Genes & Immunity

Systemic sclerosis is a connective tissue disease of unknown aetiology characterised by autoimmunity, inflammation, vascular abnormalities and ultimately fibrosis. Although great advances have been made in determining the molecular mechanisms of disease pathogenesis over the last decade, aided by new genetic screens, no current specific disease-modifying treatment is yet available. Epigenetics is defined as heritable changes that are not due to changes in DNA sequence, and there is at present intense research effort to understand the basic mechanisms of epigenetic regulation and how these impact diseases.

Investigating the Causes of Chronic Itch: New Advances Could Bring Relief

Author: Kirstie Saltsman, Ph.D
Date Published: June-2014
Source: NIAMS

Chronic itch, which occurs in many medical conditions and in response to certain drugs, affects millions of Americans, yet its causes are poorly understood. Now, investigators funded in part by the NIH’s National Institute of Arthritis and Musculoskeletal and Skin Diseases have uncovered previously unknown pathways that trigger chronic itch, painting a clearer picture of the condition and suggesting novel therapeutic strategies. Itch was once thought to be sensed through the body’s pain pathways, but research over the past few decades has revealed that it uses its own dedicated nerves, molecules and receptors. While itch is ultimately conveyed through nerves to the brain, the most well-understood itch pathway initiates with immune molecules called histamines. Histamines normally serve a protective immune function by helping combat invading pathogens, but they also trigger the itchiness caused by a mosquito bite or a bout of hives by acting on sensory nerves in the skin.

Prevent Raynaud’s Pain, Numbness and Tingling

Author: Brenda Goodman
Date Published: July-2014
Source: Arthritis Foundation

If you’re among the estimated 20 to 30 percent of people with inflammatory arthritis who also have Raynaud’s syndrome, or Raynaud’s phenomenon, a condition that affects blood flow to the extremities and causes pain, numbness and tingling, the fall and spring – months when temperatures are constantly shifting – can be especially challenging. A sudden chill may cause blood vessels to spasm, shutting off circulation and turning affected parts a ghostly shade of white or blue. Fingers, toes, hands, feet, lips and the tongue are most commonly afflicted, and they may become painfully cold, tingling or numb.

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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