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

EULAR Update Targets Organ Involvement in Systemic Sclerosis

Author: Diana Swift
Date Published: May-2017
Source: MedPage Today

In a systematic review–based update of its 2009 recommendations, the European League Against Rheumatism (EULAR) has added two new therapeutic statements addressing organ complications in systemic sclerosis (SSC). These include Raynaud's phenomenon, digital ulcers, pulmonary arterial hypertension, skin and lung disease, scleroderma renal crisis, and gastrointestinal involvement.

Digital ulcers in SSc treated with oral treprostinil: a randomized, double-blind, placebo-controlled study with open-label follow-up

Author: J. Seibold, F. Wigley, E. Schiopu, C. Denton, et al
Date Published: February-2017
Source: JSRD

Methods: The literature was reviewed. In addition, a survey was conducted of 315 rheumatologists/internists with a self-declared interest in SSc, to determine their preferred use of echocardiograms.

Background: Prostacyclins are routinely used to treat vascular features of systemic sclerosis (SSc, scleroderma) but require parenteral infusion or inhalation. This study evaluated the safety and efficacy of oral treprostinil in digital ulcers secondary to SSc. Methods: This was a randomized (1:1) placebo-controlled, multicenter study in adults with SSc and at least one active digital ulcer at entry. Oral treprostinil was administered twice daily and titrated to maximum tolerated dose with clinical assessments at Weeks 5, 10, 15 and 20. The primary endpoint was change in net digital ulcer burden. Secondary outcomes included ulcer healing and prevention, measures of hand function, quality of life, Raynaud phenomenon and global assessments. Simplified data were gathered during open-label follow up.

Pros and cons of echocardiography in the screening, diagnosis and follow-up of patients with systemic sclerosis pulmonary arterial hypertension – a rheumatologist’s perspective

Author: Murray Baron
Date Published: February-2017
Source: JSRD

Purpose: Our objective was to review the evidence regarding echocardiography in patients with systemic sclerosis (SSc) and possible pulmonary hypertension (PH).

Methods: The literature was reviewed. In addition, a survey was conducted of 315 rheumatologists/internists with a self-declared interest in SSc, to determine their preferred use of echocardiograms.

Results: The most relevant literature findings come from two studies, the DETECT study and one from the Australian Scleroderma Interest Group. In both these studies, it appears that the use of non-echocardiographic variables such as pulmonary function tests (PFTs) and values of serum N-terminal pro-brain natriuretic peptide (NT-proBNP), are adequate on their own in suggesting which patients are at high risk of PH. Echocardiograms added very little information and in fact may confuse the picture by appearing to be normal when in fact underlying PH is present.

 

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.

News for Patients

EULAR Update Targets Organ Involvement in Systemic Sclerosis

Author: Diana Swift
Date Published: May-2017
Source: MedPage Today

In a systematic review–based update of its 2009 recommendations, the European League Against Rheumatism (EULAR) has added two new therapeutic statements addressing organ complications in systemic sclerosis (SSC). These include Raynaud's phenomenon, digital ulcers, pulmonary arterial hypertension, skin and lung disease, scleroderma renal crisis, and gastrointestinal involvement.

Pneumocystis jiroveci pneumonia is a rare but serious complication for patients with rheumatic diseases

Author: Erika Darrah
Date Published: March-2017
Source: Johns Hopkins Medicine

A research team from the Johns Hopkins Division of Rheumatology lead by Christopher Mecoli, M.D., M.H.S, studied medical records of patients with rheumatic diseases who were admitted to the Johns Hopkins Hospital for pneumocystis jiroveci pneumonia (PJP) infection over a 20-year period (1996-2015). PJP is an uncommon but severe lung infection that can occur in patients with rheumatic disease, in particular in those who are taking medications that suppress the immune system.

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

Author: A. Herrick1, X. Pan, S. Peytrignet, M. Lunt, R. Hesselstrand, 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.

If the Shoe Fits … It’s a Major Feat!

Author: Lisa Goodman-Helfand
Date Published: March-2017
Source: Scleroderma News

Buying a new pair of shoes used to be one of my favorite things to do. The unsightly red spots, telangiectasia, which are generously sprinkled all over my body, limit the clothing I choose to wear. Anything backless, strapless, sleeveless, scoop-necked, or low-cut is immediately ruled out. Being that I am not by nature a conservative person, or Amish, having scleroderma has sort of sucked the joy out of shopping for clothes. But with shoes, the sky was the limit.

Though scleroderma impacted nearly every aspect of my appearance since my diagnosis at age 10, it had thankfully left my feet alone. High heels, platform shoes, open-toed sandals, flip-flops … no shoe was out of bounds for me. Aside from adhering to a reasonable budget, nothing stood between me and whatever shoes my heart desired.

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.

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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