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.

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Research News

Evidence-based detection of pulmonary arterial hypertension in systemic sclerosis: the DETECT study

Author: J Gerry Coghlan,Christopher P Denton,Ekkehard Grünig,et al
Date Published: May-2013
Source: Annals of the Rheumatic Diseases

Objective: Earlier detection of pulmonary arterial hypertension (PAH), a leading cause of death in systemic sclerosis (SSc), facilitates earlier treatment. The objective of this study was to develop the first evidence-based detection algorithm for PAH in SSc.

Conclusions The novel, evidence-based DETECT algorithm for PAH detection in SSc is a sensitive, non-invasive tool which minimises missed diagnoses, identifies milder disease and addresses resource usage.

Systemic sclerosis (scleroderma, SSc) is a vascular disease

Author: Marco Matucci-Cerinic, Bashar Kahaleh, Fredrick M. Wigley
Date Published: May-2013
Source: Arthritis & Rheumatism

Molecular Signatures in Skin Associated with Clinical Improvement during Mycophenolate Treatment in Systemic Sclerosis

Author: Monique Hinchcliff, Chiang-Ching Huang, Tammara A Wood, J Matthew Mahoney, et al
Date Published: May-2013
Source: Journal of Investigative Dermatology

Heterogeneity in systemic sclerosis (SSc) confounds clinical trials. We previously identified “intrinsic” gene expression subsets by analysis of SSc skin. Here we test the hypotheses that skin gene expression signatures including intrinsic subset are associated with modified Rodnan skin score (MRSS) improvement during mycophenolate mofetil (MMF) treatment. Gene expression and intrinsic subset assignment were measured in 12 SSc patients’ biopsies and 10 controls at baseline, and from serial biopsies of 1 cyclophosphamide-treated patient and 9 MMF-treated patients.

The degree of skin involvement identifies distinct lung disease outcomes and survival in systemic sclerosis

Author: Tricia R Cottrell, Robert A Wise, Fredrick M Wigley & Francesco Boin
Date Published: April-2013
Source: Annals of the Rheumatic Diseases

Abstract - Objective To determine whether the pattern of skin involvement can predict clinical features, risk of restrictive lung disease (RLD) and survival in a large scleroderma (SSc) cohort. Methods Demographic and clinical data collected over 30 years from 2205 patients with SSc were retrospectively analysed after subdividing subjects into four subtypes based on pattern of skin fibrosis: type 0 (no skin involvement), type 1 (limited to metacarpophalangeal joints), type 2 (distal to elbows/knees) and type 3 (proximal to elbows/knees). Clinical features associated with skin subsets were identified by regression analyses. Kaplan–Meier and Cox proportional hazards models were used to compare time to RLD and survival across subtypes.

Open label study of escalating doses of oral treprostinil diethanolamine in patients with systemic sclerosis and digital ischemia: pharmacokinetics and correlation with digital perfusion.

Author: Shah AA, Schiopu E, Hummers LK, Wade M, Phillips K, Anderson C, Wise R, Boin F, Seibold JR, Wigley F, Rollins KD.
Date Published: April-2013
Source: Arthritis Research & Therapy

Abstract - INTRODUCTION: Treprostinil diethanolamine is an innovative salt form of the prostacyclin analogue, treprostinil sodium, developed as an oral sustained release (SR) osmotic tablet. The availability of a formulation permitting convenient systemic delivery might have applicability to scleroderma vascular complications. We evaluated pharmacokinetics and perfusion in scleroderma patients with digital ischemia following escalating twice-daily doses of treprostinil diethanolamine SR. METHODS: In this dual-center, open-label, phase I pharmacokinetic study, scleroderma patients with digital ulcers were enrolled. Drug concentrations and perfusion, quantified by laser Doppler imaging, were measured over 12 hours at the 2mg and 4mg (or maximally tolerated) doses.

News for Patients

Evidence-based detection of pulmonary arterial hypertension in systemic sclerosis: the DETECT study

Author: J Gerry Coghlan,Christopher P Denton,Ekkehard Grünig,et al
Date Published: May-2013
Source: Annals of the Rheumatic Diseases

Objective: Earlier detection of pulmonary arterial hypertension (PAH), a leading cause of death in systemic sclerosis (SSc), facilitates earlier treatment. The objective of this study was to develop the first evidence-based detection algorithm for PAH in SSc.

Conclusions The novel, evidence-based DETECT algorithm for PAH detection in SSc is a sensitive, non-invasive tool which minimises missed diagnoses, identifies milder disease and addresses resource usage.

Pulmonary hypertension often misdiagnosed, research finds - U. of C. study stresses need to identify condition earlier

Author: Jessica Tobacman
Date Published: May-2013
Source: The Baltimore Sun

Whitney Gaspar has long known that she didn't have much endurance. When she was in secondary school, Gaspar said she ran a "slow mile" in gym class of 14 to 15 minutes and "avoided stuff (that required) a lot of endurance." Then in December 1999, she caught the flu and couldn't walk four or five steps without her lips turning blue, said Gaspar, 36, of Plainfield. Doctors misdiagnosed Gaspar as having asthma. In February 2000, she finally got the correct diagnosis:

Actelion gets go-ahead to continue new drug trial

Author: Caroline Copley
Date Published: May-2013
Source: Reuters

Actelion should continue a late-stage study into a new heart and lung drug, independent monitors have recommended, with final results now expected by mid-2014, giving the biotech firm hope it has a further product in its pipeline. Actelion said in a statement the Independent Data Monitoring Committee had told the company it had unanimously recommended the continuation of a late-stage study in selexipag with no modifications, adding final results should come next year.

The FDA Wants You!

Author: Melissa Healy
Date Published: April-2013
Source: Los Angeles Times

The Food and Drug Administration, acting on a law signed by President Obama in 2012, has launched the third phase of an initiative to increase patient participation in the regulation of drugs and medical devices. On Wednesday, the agency went live with a new website aimed at demystifying the regulatory process for consumers and patient advocates. The new FDA website, called FDA Patient Network, is designed to educate consumers on the process of getting medical devices and drugs from the idea stage to pharmacy and hospital shelves. Along with the FDA Commissioner's blog, this is the agency's bid to be more transparent.

Faster Drug Approvals a Tonic for Pharma Industry

Author: Ben Hirschler
Date Published: May-2013
Source: Reuters

A pickup in new drug approvals, the promise of faster regulatory decisions and more targeted medicines have quickened the pulse of the pharmaceutical industry as a big wave of patent expiries recedes. Manufacturers are producing more targeted medicines, designed to treat very specific groups of patients, thanks to a new understanding of the genetic basis of many diseases - most notably cancer.

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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