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. Over the last 23 years, 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 2010, 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.

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.


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Research News

Antagonistic Effect of the Matricellular Signaling Protein CCN3 on TGF-β- and Wnt-Mediated Fibrillinogenesis in Systemic Sclerosis and Marfan Syndrome

Author:Raphael Lemaire, Giuseppina Farina, Julie Bayle, Michael Dimarzio, Sarah A Pendergrass, Ausra Milano, Michael L Whitfield and Robert Lafyatis
Date Published: February-2010
Source: 

Abnormal fibrillinogenesis is associated with connective tissue disorders (CTDs), including Marfan syndrome (MFS), systemic sclerosis (SSc) and Tight-skin (Tsk) mice. We have previously shown that TGF-β and Wnt stimulate fibrillin-1 assembly and that fibrillin-1 and the developmental regulator CCN3 are both highly increased in Tsk skin.

Medical Mystery Pieced Together

Author:
Date Published: January-2010
Source: The Boston Channel.com

A troubling medical puzzle in South Boston has finally been pieced together. A relatively small community has an alarming number of cases of a debilitating disease.

IFN regulatory factor 5 is required for disease development in the FcgammaRIIB-/-Yaa and FcgammaRIIB-/- mouse models of systemic lupus erythematosus.

Author: Richez C, Yasuda K, Bonegio RG, Watkins AA, Aprahamian T, Busto P, Richards RJ, Liu CL, Cheung R, Utz PJ, Marshak-Rothstein A, Rifkin IR.
Date Published: January-2010
Source: Pubmed

Polymorphisms in the transcription factor IFN regulatory factor 5 (IRF5) are strongly associated in human genetic studies with an increased risk of developing the autoimmune disease systemic lupus erythematosus.

Th1 transcription factor T-bet regulates the expression of Tim-3.

Author: Anderson AC, Lord GM, Dardalhon V, Lee DH, Sabatos CA, Glimcher LH, Kuchroo VK.
Date Published: January-2010
Source: Pubmed

Tim-3 (T cell immunoglobulin, mucin domain)-3 is a membrane protein expressed at late stages of IFN-gamma secreting CD4(+) T helper type 1 (Th1) cell differentiation and constitutively on dendritic cells (DC).

Rosiglitazone alleviates the persistent fibrotic phenotype of lesional skin scleroderma fibroblasts.

Author: Shi-Wen X, Eastwood M, Stratton RJ, Denton CP, Leask A, Abraham DJ.
Date Published: January-2010
Source: Pubmed

Objective. The transcription factor peroxisome proliferator-activated receptor (PPAR)-gamma plays an important role in controlling cell differentiation.

News for Patients

Alternative Therapies for Raynaud’s

Author: Dr. Fredrick Wigley
Date Published: June-2010
Source: NY Times

Can biofeedback, fish oils, dietary supplements or other remedies ease the feelings of coldness, numbness and tingling in the fingers and toes of people with Raynaud’s disease?

Does Exercise Make Raynaud’s Worse?

Author: Dr. Fredrick Wigley
Date Published: May-2010
Source: NY Times

Can typing on a keyboard make coldness in the fingers feel worse? How about biking or vigorous exercise?

Ask the Expert: Raynaud’s Phenomenon

Author: Dr. Fredrick Wigley
Date Published: April-2010
Source: NY Times

“While it’s normal to feel cold when you step outside on a winter’s day without a jacket, the feeling of cold comes way too easily for sufferers of Raynaud’s,”

How Serious Is Raynaud’s Phenomenon?

Author: Dr. Fredrick Wigley
Date Published: May-2010
Source: NY Times

A troubling medical puzzle in South Boston has finally been pieced together. A relatively small community has an alarming number of cases of a debilitating disease.

Medical Mystery Pieced Together

Author:
Date Published: January-2010
Source: The Boston Channel.com

A troubling medical puzzle in South Boston has finally been pieced together. A relatively small community has an alarming number of cases of a debilitating disease.

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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