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

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.

Chronic Toll-like receptor 4 stimulation in skin induces inflammation, macrophage activation, transforming growth factor beta signature gene expression, and fibrosis.

Author: Stifano G, Affandi AJ, Mathes AL, Rice LM, Nakerakanti S, Nazari B, Lee J, Christmann RB, Lafyatis R.
Date Published: June-2014
Source: Arthritis Research & Therapy

The crucial role of innate immunity in the pathogenesis of systemic sclerosis (SSc) is well established, and in the past few years the hypothesis that Toll-like receptor 4 (TLR4) activation induced by endogenous ligands is involved in fibrogenesis has been supported by several studies on skin, liver, and kidney fibrosis. These findings suggest that TLR4 activation can enhance transforming growth factor beta (TGF-beta) signaling, providing a potential mechanism for TLR4/Myeloid differentiation factor 88 (MyD88)-dependent fibrosis.

Unique Predictors of Mortality in Patients With Pulmonary Arterial Hypertension Associated With Systemic Sclerosis in the Reveal Registry.

Author: Chung L, Farber HW, Benza R, Miller DP, Parsons L, Hassoun PM, McGoon M, Nicolls MR, Zamanian RT.
Date Published: July-2014
Source: Nature Reviews Rheumatology

Background:Patients with pulmonary arterial hypertension associated with systemic sclerosis (SSc-APAH) experience higher mortality rates than patients with idiopathic disease and those with other connective tissue diseases (CTD-APAH). We sought to identify unique predictors of mortality associated with SSc-APAH in the CTD-APAH population. Methods:The Registry to Evaluate Early and Long-Term PAH Management (REVEAL) is a multicenter, prospective US-based registry of patients with previously and newly diagnosed (enrollment within 90 days of diagnostic right heart catheterization) PAH.

News for Patients

Should I Refer to a Rheumatologist? Early Warning Signs of Inflammatory Rheumatic Diseases

Author: ACR
Date Published: July-2014
Source: ACR Simple Tasks

Over 11 million Americans suffer from inflammatory rheumatic diseases, and that number jumps to over 50 million when you include osteoarthritis. With numbers this large, prioritizing referrals can become difficult. Signs of a rheumatic disease can be symptomatic of different disorders and can be difficult to identify. To help you prioritize your referrals, here are some red flags to watch out for:

Sun Protection and Connective Tissue Disease

Author: Isabela Wieczorek, MD and Horatio F. Wildman, MD
Date Published: July-2014
Source: Hospital for Special Surgery

After a long winter, summer is finally here. As we spend more time outdoors, it is important to protect against the strong summer rays. Sunlight contains harmful ultraviolet rays that increase the risk of skin cancer, accelerate aging of the skin, and flare connective tissue disease. Sunlight that reaches the Earth’s surface contains two types of ultraviolet (UV) light, both A and B. UVB light is more damaging, causing sunburns and altering DNA in the body’s cells. Sunlight contains about 10-20 times more UVA light, which penetrates the skin more deeply. Both forms of UV radiation cause skin cancer and premature aging of the skin. Tanning beds also produce UVA and UVB radiation, often at much higher levels than the sun.

9 Things I Have Learned Through 20 Years of Chronic Illness

Author: Lisa Copen
Date Published: July-2014
Source: Huffington Post

As I approach my 21st year of living with degenerative rheumatoid arthritis, I consider myself well-versed in coping with chronic illness. At the same time, I am constantly surprised at the new lessons that demand to be acknowledged and learned. Living with illness is like sitting on a pottery wheel as a soft lump of clay. It doesn't matter how long we sit there or what shape we are, as long as the hands of illness keep touching our life, we will be reshaped into something new. Here are the top nine things I have learned through 21 years of illness:

8 Ways to Save on Prescriptions

Author: Pain Pathways Magazine
Date Published: July-2014
Source: Pain Pathways Magazine

For many people with chronic pain, medication costs add up quickly. Here are eight practical ways to reduce the burden on your wallet. John recently went on disability because his chronic pain interfered with his ability to work. His limited monthly income makes it challenging for him to pay his bills, especially with the staggering cost of his many prescriptions. Sarah, who also suffers from chronic pain, is able to continue working. She is self-employed and pays for an insurance plan, but it has a high prescription deductible — meaning she has to cover a large portion of her medications on her own. Cliff, another chronic pain sufferer, has a steady job with good health coverage. However, due to the large number of prescription drugs he takes (many of them at the highest prescription tier), his copayments represent a huge chunk of his monthly budget.

Prevent Raynaud’s Pain, Numbness and Tingling

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

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. Thankfully, there are ways to prevent these attacks. Here are some strategies that will help keep you warm through changing seasons.

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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