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.


AddThis Social Bookmark Button
 
 

Research News

Screening for PAH in Systemic Sclerosis: Does It Matter?

Author: Kevin Deane, MD
Date Published: February-2012
Source: Medscape Today

ulmonary arterial hypertension (PAH) is a leading cause of mortality in patients with systemic sclerosis (SSc).[1] Once commonly thought to be a late complication of SSc, support for PAH as an early manifestation of disease is growing. PAH is present within 5 years of the onset of the first non-Raynaud symptoms of SSc in approximately 50% of patients.

Stimulation of soluble guanylate cyclase reduces experimental dermal fibrosis

Author: C. Beyer, N. Reich, S. Schindler, et al
Date Published: January-2012
Source: Annals of the Rheumatic Diseases

Fibrosis and vascular disease are cardinal features of systemic sclerosis (SSc). Stimulators of soluble guanylate cyclase (sGC) are vasoactive drugs that are currently being evaluated in phase III clinical trials for pulmonary arterial hypertension.

Emerging patterns of genetic overlap across autoimmune disorders.

Author: Richard-Miceli C, Criswell LA.
Date Published: January-2012
Source: Genome Medicine

Most of the recently identified autoimmunity loci are shared among multiple autoimmune diseases. The pattern of genetic association with autoimmune phenotypes varies, suggesting that certain subgroups of autoimmune diseases are likely to share etiological similarities and underlying mechanisms of disease.

Gender and ethnicity differences in the prevalence of scleroderma-related autoantibodies.

Author: Krzyszczak ME, Li Y, Ross SJ, et al
Date Published: October-2011
Source: Journal of Cellular and Molecular Medicine

Autoantibodies to topoisomerase I (topo I), RNA polymerase III (RNAPIII), centromere, U3RNP/fibrillarin, Th, PM-Scl, and U1RNP found in scleroderma (SSc) are associated with unique clinical subsets. The effects of race and gender on autoantibody prevalence and clinical manifestations were examined.

Elevated expression of cav-1 in a subset of SSc fibroblasts contributes to constitutive Alk1/Smad1 activation.

Author: Haines P, Hant FN, Lafyatis R, Trojanowska M, Bujor AM.
Date Published: January-2012
Source: Journal of Cellular and Molecular Medicine

Previous studies have shown that the TGFβ/Alk1/Smad1 signaling pathway is constitutively activated in a subset of systemic sclerosis (SSc) fibroblasts and this pathway is a critical regulator of CCN2 gene expression. Caveolin-1 (cav-1), an integral membrane protein and the main component of caveolae, has also been implicated in SSc pathogenesis.

News for Patients

Screening for PAH in Systemic Sclerosis: Does It Matter?

Author: Kevin Deane, MD
Date Published: February-2012
Source: Medscape Today

ulmonary arterial hypertension (PAH) is a leading cause of mortality in patients with systemic sclerosis (SSc).[1] Once commonly thought to be a late complication of SSc, support for PAH as an early manifestation of disease is growing. PAH is present within 5 years of the onset of the first non-Raynaud symptoms of SSc in approximately 50% of patients.

Emerging patterns of genetic overlap across autoimmune disorders.

Author: Richard-Miceli C, Criswell LA.
Date Published: January-2012
Source: Genome Medicine

Most of the recently identified autoimmunity loci are shared among multiple autoimmune diseases. The pattern of genetic association with autoimmune phenotypes varies, suggesting that certain subgroups of autoimmune diseases are likely to share etiological similarities and underlying mechanisms of disease.

An Evaluation of Long-Term Survival From Time of Diagnosis in Pulmonary Arterial Hypertension From REVEAL.

Author: Benza RL, Miller DP, Barst RJ, et al
Date Published: January-2012
Source: Chest

The Registry to EValuate Early And Long-Term Pulmonary Arterial Hypertension Disease Management (REVEAL) was established to characterize the clinical course, treatment, and predictors of outcomes in patients with pulmonary arterial hypertension (PAH) in the US. To date, estimated survival based on time of patient enrollment has been established and reported.

Evidence of the contribution of the X chromosome to systemic sclerosis susceptibility: association with the functional IRAK1 196Phe/532Ser haplotype.

Author: Dieudé P, Bouaziz M, Guedj M, et al
Date Published: December-2011
Source: Arthritis & Rheumatism

Several autoimmune disorders, including systemic sclerosis (SSc), are characterized by a strong sex bias. To date, it is not known whether genes on the sex chromosomes influence SSc susceptibility. Recently, an IRAK1 haplotype that contains the 196Phe functional variant (rs1059702), located on Xq28, was found to confer susceptibility to systemic lupus erythematosus (SLE).

Mechanism, Potential Therapy for Scleroderma Lung Disease Uncovered

Author: NIAMS / Tourkina E, et al
Date Published: January-2012
Source: NIAMS Spotlight on Research 2012

Investigators, partially supported by the National Institute of Arthritis and Musculoskeletal and Skin Diseases, have found that a deficiency in the protein caveolin-1 (cav-1) is linked to the development of interstitial lung disease, the scarring of lung tissue that causes disability and death in people with scleroderma.

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.

» Click here for details