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

Pathogenesis of systemic sclerosis: recent insights of molecular and cellular mechanisms and therapeutic opportunities

Author: John Varga, Maria Trojanowska, Masataka Kuwana
Date Published: July-2017
Source: Journal of Scleroderma and Related Disorders

Systemic sclerosis (SSc) is a complex disease characterized by early microvascular abnormalities, immune dysregulation and chronic inflammation, and subsequent fibrosis of the skin and internal organs. Excessive fibrosis, distinguishing hallmark of SSc, is the end result of a complex series of interlinked vascular injury and immune activation, and represents a maladaptive repair process. Activated vascular, epithelial, and immune cells generate pro-fibrotic cytokines, chemokines, growth factors, lipid mediators, autoantibodies, and reactive oxygen species. These paracrine and autocrine cues in turn induce activation, differentiation, and survival of mesenchymal cells, ensuing tissue fibrosis through increased collagen synthesis, matrix deposition, tissue rigidity and remodeling, and vascular rarefaction.

The mighty fibroblast and its utility in scleroderma research

Author: Sara M. Garrett, DeAnna Baker Frost, Carol Feghali-Bostwick
Date Published: May-2017
Source: Journal of Scleroderma and Related Disorders

Fibroblasts are the effector cells of fibrosis characteristic of systemic sclerosis (SSc, scleroderma) and other fibrosing conditions. The excess production of extracellular matrix (ECM) proteins is the hallmark of fibrosis in different organs, such as skin and lung. Experiments designed to assess the pro-fibrotic capacity of factors, their signaling pathways, and potential inhibitors of their effects that are conducted in fibroblasts have paved the way for planning clinical trials in SSc. As such, fibroblasts have proven to be valuable tools in the search for effective anti-fibrotic therapies for fibrosis. Herein we highlight the characteristics of fibroblasts, their role in the etiology of fibrosis, utility in experimental assays, and contribution to drug development and clinical trials in SSc.This article is available for you to download for free for 1 week until 2nd August 2017.

Systemic Sclerosis Linked With Altered Gut Microbiome

Author: Gregory M. Weiss, MD
Date Published: July-2017
Source: Rheumatology Network

The numbers of Bacteroidetes bacteria in the GI tracts of 2 separate cohorts of patients with systemic sclerosis were significantly reduced when compared with healthy controls. American patients with systemic sclerosis had more extensive alterations in their intestinal microbiota than those in a Norwegian cohort. An abundance of Prevotella species was associated with moderate-to-severe GI symptoms in patients with systemic sclerosis. Clostridium species abundance was associated with low GI symptom severity, and Lactobacillus with none-to-mild constipation.

Biomarkers Predict Digital Vascular Events in Scleroderma

Author: Gregory M. Weiss, MD
Date Published: July-2017
Source: Rheumatology Network

The likelihood of digital vascular pits, ulcers, or gangrene is increased in patients with scleroderma who are double-positive for anti-interferon-inducible protein 16 and anticentromere autoantibodies. Particularly high anti-interferon-inducible protein 16 levels were found in patients with scleroderma who had active ischemic ulcers or gangrene. Measuring anti-interferon-inducible protein 16 levels in patients with scleroderma and anticentromere antibody positivity may help stratify those at high risk for significant digital vascular events.

Mortality risk prediction in scleroderma-related interstitial lung disease: the SADL model

Author: Julie Morisset, MD; Eric Vittinghoff, PhD; Brett M. Elicker, MD; Xiaowen Hu, MD; Stephanie Le, MD; Jay H. Ryu, MD; Kirk D. Jones, MD; Anna Haemel, MD; Jeffrey A. Golden, MD; Francesco Boin, MD; Brett Ley, MD; Paul J. Wolters, MD; Talmadge E. King, Jr., MD; Harold R. Collard, MD FCCP; Joyce S. Lee, MD
Date Published: June-2017
Source: Chest Journal

Rationale Interstitial lung disease (ILD) is an important cause of morbidity and mortality in scleroderma (Scl). Risk prediction and prognostication in Scl-ILD patients is challenging because of heterogeneity in the disease course.

News for Patients

Uptravi Slows Progression of Pulmonary Hypertension Stemming from Connective Tissue Disease, Study Finds

Author: Iqra Mumal
Date Published: August-2017
Source: Pulmonary Hypertension News

Actelion’s Uptravi (selexipag) delays the progression of pulmonary arterial hypertension that stems from connective tissue disease, a follow-up analysis of Phase 3 clinical trial findings indicates. People with PAH-CTD also tolerate the therapy well, according to the study. The PAH part of PAH-CTD refers to high blood pressure in the lungs’ arteries.

Prucalopride Can Help Improve Gastrointestinal Symptoms in SSc Patients, Study Shows

Author: Alice Melao
Date Published: August-2017
Source: Scleroderma News

Prucalopride, marketed under the name Resolor in Europe and Resotran in Canada, can safely manage mild to severe gastrointestinal (GI) symptoms associated with systemic sclerosis (SSc), including bowel movement and transit, reflux disease, and bloating, finds a study published in the journal Arthritis Research and Therapy. Doctors have proposed using medicines to improve prokinetics, or motility of the GI tract, in treating SSc patients. But the lack of proper clinical trials demonstrating the therapeutic potential of such drugs in the SSc population discouraged their use in clinics.

How to Fuel Engaged Patient Dialogue

Author: Carina Stanton
Date Published: July-2017
Source: The Rheumatologist

In the average 10–15 minutes a rheumatologist has to spend with a patient during a clinic visit, limited time exists for extensive dialogue. Yet, taking the time to delve a little deeper by asking a patient questions in order to understand and address concerns could make a big difference in a patient’s care.

“Too often, a patient may feel [too] intimidated to ask a question to clarify a term we use or may fear embarrassment [and avoid] bringing up a concern that can be related to their condition, such as intimacy issues,” notes Ara Dikranian, MD, a rheumatologist with the Cabrillo Center for Rheumatology in El Cajon, Calif.

Use of intravenous epoprostenol as a treatment for the digital vasculopathy associated with the scleroderma spectrum of diseases

Author: Law, S.,Farber, H., Simms, R. 
Date Published: August-2017
Source: Journal of Scleroderma and Related Disorders

Intravenous prostanoid therapy is recommended for severe systemic sclerosis-related digital vasculopathy. The evidence supporting this recommendation is limited. The aim of this study was to evaluate the safety and efficacy of treating scleroderma spectrum digital vasculopathy with intravenous epoprostenol.

5 Tips for Managing Raynaud’s Syndrome Through the Summer

Author: Wendy Henderson
Date Published: July-2017
Source: Scleroderma News

You may think the summer months offer some respite to those who suffer from Raynaud’s syndrome but the warmer months can bring their own set of problems. Many offices, shopping malls, and other public spaces turn on the air conditioning in the warmer weather, which is great for helping you cool down, but many places have the AC turned up so high that it brings on symptoms of Raynaud’s.

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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