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Scleroderma Foundation
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eLetter #807 | March 29, 2019  

2019 Conference Video Promo

Get a Feel for the National Conference
July 19-20-21, Chicago, Illinois

If you've never been to the Scleroderma Foundation's National Patient Education Conference, you might not understand why so many people affected by scleroderma are so excited to attend year after year. 

Watch a brief video to catch a glimpse of their experience.

Register today. Early bird discount available until 5/22. Hotel info shared upon conference registration. Scholarship notifications sent mid-April.

Brochure Cover Overview and Causes

Scleroderma: Overview and Causes

An updated brochure (January 2019) that provides an overview of the different types of scleroderma and the biological processes involved in those different forms has been posted on the Scleroderma Foundation website. > patients & newly diagnosed > brochure downloads

The brochure details systemic sclerosis (SSc), its subtypes of limited cutaneous and diffuse cutaneous; and localized scleroderma and its subtypes:  morphea, linear scleroderma, and en coup de sabre.  There is specific information about organ involvement 

The Scleroderma Foundation thanks Maureen Mayes, M.D., M.P.H., University of Texas/Houston, and John Varga, M.D., Northwestern University, for their assistance the in preparation of this brochure.

Scleroderma Video

There is an online library of videos produced by the Scleroderma Foundation Tri-State Chapter in collaboration with the Steffens Foundation and Starlight Productions covering a wide range of topics including newly diagnosed, treatment, symptom management and featuring numerous medical experts.

Stepping Out Logo 2018 Be Part of the Cure - Web

Stepping Out to Cure Scleroderma 2019

Plan Ahead for April Walks

Stepping Out to Cure Scleroderma is a fundraising event that brings together family and friends of those who have scleroderma. The monies raised by individuals and teams are used to fulfill the Scleroderma Foundation's three-fold mission of support, education, and research.

find more dates:

Maureen Mayes M.D.

Reach for the Cure

"A cure for scleroderma would be an intervention that halts the disease in its early stages so that damage does not occur and the disease does not progress," Maureen Mayes, M.D, M.P.H., University of Texas/Houston.

The need is great. The time is now. The choice is yours. Please give generously:

Clincal Trial Opportunity

Safety and Tolerability Study of AVID200, a Novel TGF-beta 1 & 3 Inhibitor, in Patients with Diffuse Cutaneous Systemic Sclerosis

This Phase 1 trial is designed to evaluate the safety, tolerability, and preliminary efficacy of AVID200 in diffuse cutaneous systemic sclerosis (SSc) patients. Currently the Phase 1b trial is being conducted at three centers in the United States, University of Pittsburgh Medical Center (, Hospital of Special Surgery (amdemicaelb@HSS.EDU), and University of Pennsylvania ( with more centers expected to be open soon.

To participate in the trial, the following criteria must be met:

  • Be at least 18 years old
  • Be classified as having SSc with a total ≥ 9 according to the American College of Rheumatology/European League Against Rheumatism (ACR/EULAR) criteria for the classification of SSc
  • Have diffuse cutaneous SSc (dcSSc) subset
  • Disease duration < 5 years since the onset of first SSc manifestations (other than Raynaud's phenomenon) at the time of enrollment
  • Have a MRSS ≥ 15, and with a score that has not decreased by > 5 points in the past 2 months (8 weeks)
  • Have a skin score ≥ 2 on at least one forearm

Read more at and

Conversation with Dr. Robert Lafyatis on the Importance of Blocking TGF-beta to Reverse Fibrosis in Systemic Sclerosis

Robert Lafyatis MD new photoRobert Lafyatis, M.D., is Professor of Medicine and Director of the Scleroderma Center at the University of Pittsburgh Medical Center.

Q: What role does TGF-beta play in systemic sclerosis?

Dr. Lafyatis: Data from our group, as well as from many other investigators over the years, have strongly supported increased TGF-beta signaling as a basic defect in systemic sclerosis and many other fibrotic diseases. Further, we have observed that TGF-beta 1 and 3 expression in the skin are associated with the degree of skin fibrosis in systemic sclerosis skin.

Q: What could TGF-beta inhibition achieve in systemic sclerosis?

Dr. Lafyatis: Our hope is that blocking TGF-beta could become a successful strategy to reverse fibrosis in systemic sclerosis. We have strong preclinical and early clinical data that supports this and needs to be evaluated further.

Q: What are you planning next?

Dr. Lafyatis: I’m very interested in the new generation of TGF-beta inhibitors that selectively target the TGF-beta isoforms most strongly associated with fibrosis. We are conducting a clinical a trial with one such agent. This is a crucial step to evaluate this new and potentially very important treatment paradigm.

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Disclaimer: The Scleroderma Foundation in no way endorses any drugs, treatments, clinical trials, or studies reported in the eLetter. Information is provided to keep the readers informed. Because the manifestations and severity of scleroderma vary among individuals, personalized medical management is essential. Therefore, it is strongly recommended that all drugs and treatments be discussed with the reader’s physician(s) for proper evaluation and treatment.

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