Get Involved - You can make a difference

There are many ways to become a partner in the search for improved therapies and a cure for scleroderma. In fact, there is something everyone can do. From making a direct online contribution and supporting the SRF research program to raising awareness in your community by hosting a special event, there’s a way for you to make a difference and help save lives.

Every contribution to the Scleroderma Research Foundation is an investment in the search for answers – helping to fund groundbreaking medical research at leading institutions around the nation and, now, around the world.

The programs of the Scleroderma Research Foundation all revolve around a single objective: to fund and facilitate the highest quality scleroderma research that will yield maximum results. Click here to make a secure online contribution now. All donations to the SRF are tax-deductible to the extent allowed by law.


Join Cure Crew… Become a Part of the Team!

Getting involved and taking action in the fight for a cure can be powerful antidotes to the challenges of scleroderma. The Crew is growing and we’d love for you to be a part of it!

A growing number of patients, their family members and friends are hosting special events or participating in other organized activities to help raise funds and awareness for scleroderma. These events come in all forms (some aren’t really ‘events’ at all) and, no matter the size, they have a tremendous impact on the SRF’s ability to fund promising research. Last year, volunteers raised more than $250,000 to advance medical research toward a cure. That’s enough money to fund multiple research projects that will help scleroderma patients.

For many years, the SRF referred to these bighearted individuals as Cure Advocates. Advocating for a cure in communities from coast to coast, Cure Advocates compose an entire “Crew” of like-minded volunteers who form a national network of Cure Crew members. In aggregate, Cure Crew members are educating thousands of people about scleroderma. Sometimes, volunteers even partner with local television, radio and print media to feature stories and air public service announcements. For more information on volunteering or to become a Cure Crew member, please click here.


Planned Giving

Planned giving is a way to support the SRF via gifts that leave a lasting legacy. Planned gifts typically use estate and tax planning techniques to provide a benefit to the SRF and other beneficiaries in ways that maximize the gift and/or minimize its impact on the donor's estate.

A planned gift is any major contribution, made during your lifetime or afterward as part of an overall financial and/or estate plan. Whether these gifts include cash, appreciated securities/stock, real estate, artwork, partnership interests, personal property, life insurance, a retirement plan, etc., the benefits of funding a planned gift are often very attractive to both the generous donor, in terms of tax liability, and to the future of scleroderma research. Visit our planned giving section to learn more.

There are many Ways to Give, get involved and help the Scleroderma Research Foundation continue its work to discover improved therapies and a cure for people living with scleroderma.

 
 

Research News

Treatment outcome in early diffuse cutaneous systemic sclerosis: the European Scleroderma Observational Study (ESOS)

Author: A. Herrick, X. Pan, S. Peytrignet, M. Lunt, R. Hesselstrand, L. Mouthon, A. Silman, E. Brown, L. Czirják, J. Distler, O. Distler, et al
Date Published: February-2017
Source: Annals of the Rheumatic Diseases

Objectives The rarity of early diffuse cutaneous systemic sclerosis (dcSSc) makes randomised controlled trials very difficult. We aimed to use an observational approach to compare effectiveness of currently used treatment approaches.

Methods This was a prospective, observational cohort study of early dcSSc (within three years of onset of skin thickening). Clinicians selected one of four protocols for each patient: methotrexate, mycophenolate mofetil (MMF), cyclophosphamide or ‘no immunosuppressant’. Patients were assessed three-monthly for up to 24 months. The primary outcome was the change in modified Rodnan skin score (mRSS). Confounding by indication at baseline was accounted for using inverse probability of treatment (IPT) weights. As a secondary outcome, an IPT-weighted Cox model was used to test for differences in survival.

Changes in plasma CXCL4 levels are associated with improvements in lung function in patients receiving immunosuppressive therapy for systemic sclerosis-related interstitial lung disease

Author: E. Volkmann, D. Tashkin, M. Roth, P. Clements, D. Khanna, D. Furst, M. Mayes, J. Charles, C. Tseng, R. Elashoff and S. Assassi
Date Published: January-2017
Source: Arthritis Research & Therapy

Increased circulatory levels of the chemokine CXCL4 have been associated with the presence of interstitial lung disease (ILD) in an observational study of patients with systemic sclerosis (SSc). The purpose of the present study was to evaluate the relationship between baseline CXCL4 level and extent of ILD in the context of a randomized controlled trial and to determine whether changes in CXCL4 levels in response to immunosuppression are associated with future progression of SSc-ILD.

Systematic autoantigen analysis identifies a distinct subtype of scleroderma with coincident cancer

Author: Robert Linda
Date Published: January-2017
Source: Johns Hopkins Rheumatology

A study by Livia Casciola-Rosen, Ph.D. and Aim Shah, M.D. from the Johns Hopkins Division of Rheumatology in collaboration with Steve J. Elledge, Ph.D. and collegues at MIT and Harvard, used cutting-edge technologies to identify a new subgroup of antibodies present in people without classical scleroderma-associated antibodies who develop cancer and scleroderma within a short period of time.

Immunosuppressive Therapy Helps Systemic Sclerosis Patients With Lung Disease

Author: Patricia Inacio
Date Published: January-2017
Source: Scleroderma News

Levels of the cytokine CXCl4 in the bloodstream drop sharply in response to immunosuppressive therapy, and are associated with improved lung function in systemic sclerosis (SSc) patients with interstitial lung disease (ILD), a study shows. The research, “Changes in plasma CXCL4 levels are associated with improvements in lung function in patients receiving immunosuppressive therapy for systemic sclerosis-related interstitial lung disease,” was published in the journal Arthritis Research & Therapy.

Gene Activity Predicts Progression of Autoimmune Disease, Researchers Find

Author: Jennie Dusheck
Date Published: December-2016
Source: Stanford Medicine

New research provides additional evidence that rituximab, a B-cell depletion therapy, improves lung fibrosis and reduces skin thickening in patients with systemic sclerosis (SSc).

Stanford researchers and their collaborators have found a way to tell whether patients with systemic sclerosis were improving during drug treatment a year before a standard clinical test could. Researchers at the Stanford University School of Medicine and six other institutions have designed a new diagnostic tool for a rare and deadly autoimmune disease that affects the skin and internal organs.

News for Patients

Combo Tx Aids in Scleroderma PAH

Author: Nancy Walsh
Date Published: January-2017
Source: MedPage Today

Initial combination therapy with ambrisentan (Letairis) and tadalafil (Cialis) was more effective than monotherapy with either agent alone among patients with pulmonary arterial hypertension associated with connective tissue disease (CTD-PAH), a post-hoc subgroup analysis of the AMBITION trial found. Among patients with CTD-PAH randomized to receive both agents, the risk of having a first clinical event such as hospitalization for worsening PAH was 57% lower than in the two pooled monotherapy groups (HR 0.43, 95% CI 0.24-0.77), according to John Gerry Coghlan, MD, of the Royal Free Hospital in London, and colleagues.

Changes in plasma CXCL4 levels are associated with improvements in lung function in patients receiving immunosuppressive therapy for systemic sclerosis-related interstitial lung disease

Author: E. Volkmann, D. Tashkin, M. Roth, P. Clements, D. Khanna, D. Furst, M. Mayes, J. Charles, C. Tseng, R. Elashoff and S. Assassi
Date Published: January-2017
Source: Arthritis Research & Therapy

Increased circulatory levels of the chemokine CXCL4 have been associated with the presence of interstitial lung disease (ILD) in an observational study of patients with systemic sclerosis (SSc). The purpose of the present study was to evaluate the relationship between baseline CXCL4 level and extent of ILD in the context of a randomized controlled trial and to determine whether changes in CXCL4 levels in response to immunosuppression are associated with future progression of SSc-ILD.

Noninvasive Tests Can Help to Identify Those Most Likely, or Unlikely, to Have PH

Author: Magdalena Kegel
Date Published: January-2017
Source: Raynauds News

Noninvasive methods can help to determine which patients have a high probability of developing pulmonary hypertension (PH) and which are most unlikely to do so, researchers reported — offering clinicians further tools when examining people with suspected lung hypertension. The study, “Use of ECG and Other Simple Non-Invasive Tools to Assess Pulmonary Hypertension,” was published in the journal PLOS ONE.

Immunosuppressants Only of ‘Weak’ Benefit to Diffuse Scleroderma Patients, Study Reports

Author: Magdalena Kegel
Date Published: February-2017
Source: Scleroderma News

A large study following patients in the early stages of diffuse cutaneous scleroderma showed that immunosuppressants offered only a negligible benefit for those who took them, compared to those who didn’t. Since immunosuppressants produced numerically larger reductions in skin symptoms, the findings may support patients using such drugs from the onset of their disease. But since differences between treated and untreated patients were not statistically significant, the study may also point to the need for better treatments.

Estrogen Likely Contributes to Cold-induced Raynaud’s in Women

Author: Magdalena Kegel
Date Published: February-2017
Source: Raynauds

Estrogen may contribute to the development of Raynaud’s phenomenon in women, according to a study examining the relationship between palm blood flow and the hormone in mice. The findings might explain why Raynaud’s is more common in women of childbearing age. The study noted that reduced blood flow was mediated by estrogen’s effects on cell surface receptors. The study, “G-protein coupled estrogen receptor-mediated non-genomic facilitatory effect of estrogen on cooling-induced reduction of skin blood flow in mice,” was published in the European Journal of Pharmacology.

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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