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eLetter #804 | March 8, 2019  

2019 National Conference Chicago Design

National Patient
Education Conference

July 19-20-21, 2019
Chicago, Illinois


March 20 Deadline for Conference Scholarship

Applications must be received in the Scleroderma Foundation National Office by 5 p.m. Eastern Time on March 20.  Late applications will not be considered.  Download the application form at www.scleroderma.org/scholarship.

Submit applications via email to: sgianetta@scleroderma.org.

Paper applications may be mailed or faxed to:
Scleroderma Foundation
Attention: Scholarship Committee
300 Rosewood Drive, Suite 105
Danvers, MA 01923

FAX:  (978) 777-1313

Scholarships are for first-time attendees who have scleroderma, including adults and children, or a parent/caregiver of a minor child who has scleroderma.  Visit www.scleroderma.org/conference for details.

Medline Plus Logo new

 


5 Things to Know if You Have Scleroderma

MedlinePlus Magazine (published by the National Institutes of Health), interviewed Maureen Mayes, M.D., founder and director of the Scleroderma Clinical and Research Program at the University of Texas Health Science Center in Houston, and she offered helpful advice for those who've been diagnosed with scleroderma.

Dr. Mayes is the 2017 recipient of the Scleroderma Foundation's Doctor of the Year award and is a long-time member of the Foundation's Medical and Scientific Advisory Board Steering Committee.   

read the full article

TOSS scleroderma self management


Taking Charge of Systemic Sclerosis

The Internet is a valuable tool for people living with systemic scleroderma as they seek resources and information on how to best manage the disease. This is especially so for those who don’t live in an area where they have easy access to Foundation support groups and chapter education events.  But, finding trusted sources on the Web can sometimes be a challenge.

The Scleroderma Foundation is pleased to be a partner on a NEW ONLINE RESOURCE called “Taking Charge of Systemic Sclerosis (TOSS); An Internet Self-Management Program.”  Learn more about it by following this link https://www.selfmanagescleroderma.com/

Dr. Dinesh Khanna.jpg

Dinesh Khanna, M.D., M.Sc.


Results of Controlled Trial Evaluating Internet-Based Self-Management in Systemic Sclerosis

Read the results of a study conducted to compare an internet-based self-management program to a patient-focused educational book developed to assess measures of self-efficacy and other patient-reported outcomes in people who have systemic sclerosis (SSc).  The study recruited patients from the University of Michigan and the Medical University of South Carolina, and was conducted by a large team led by Dinesh Khanna, M.D., M.Sc., and included input from Laura Dyas, Robert Riggs, and Kerri Connolly of the Scleroderma Foundation, and Janet. L. Pool, Ph.D., O.T.R./L., F.A.O.T.A.

The study was supported by a Patient-Centered Outcomes Research Institute Award (CER-1310-08323) and by by the NIH/National Institute of Arthritis and Musculoskeletal and Skin Diseases (K24-AR-063129).

read the full study

Stepping Out Logo 2018 Be Part of the Cure - Web


Stepping Out to Cure Scleroderma 2019

Upcoming Walk Dates and Locations

Stepping Out to Cure Scleroderma is a fundraising event that brings together family and friends around 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: scleroderma.org/steppingout

2015 ATS PAR image


Meet the Experts

Saturday, May 18, 2019, Dallas, Texas

The American Thoracic Society Public Advisory Roundtable (PAR) 13th Annual FREE Patient/Family Forum focuses on "Taking Charge of Your Lung Health" with an outstanding panel, including:  Anne-Marie Russell, Ph.D., MSc.N., Daniel Croft, M.D., M.P.H., Narelle Cox, Ph.D., Kathleen Lindell, Ph.D., and Kelly Chin, M.D. The forum takes place on May 18 at the Hyatt Regency Hotel, 300 Reunion Boulevard, Dallas, Texas, from 10 a.m. to 2 p.m.

The welcome message is delivered by Kerri Connolly, Chair of the ATS PAR and Scleroderma Foundation Director of Programs & Services.

Please RSVP by email to cwhite@thoracic.org no later than Wednesday, May 8, 2019.  For more information, please contact Mr. Courtney L. White, (212) 315-8640.

read more

Michigan Webinar 2019 March


Innovative Therapies for Scleroderma Patients

Webinar: Thursday, March 14, 7 p.m. - 8:30 p.m. Eastern Time

Richard Martin, M.D., founder of West Michigan Rheumatology, will present innovative therapies for scleroderma patients.  Dr. Martin is a Medical Advisory Board Member of the Scleroderma Foundation Michigan Chapter and has presented at patient education conferences. He and his practice see hundreds of individuals who have scleroderma a year.

Please register to attend the webinar via this link: https://zoom.us/meeting/register/38ed8fbc55e242187510d14dfea9e911, and use meeting ID: 269-679-319

2019 National Conference Chicago Design


Register Today for the National Patient Education Conference

July 19-20-21, Chicago, Illinois

Register online for the 2019 National Patient Education Conference. The early bird discount is available until May 22, after which regular rates apply.  

Hotel information is shared upon conference registration.

If you are applying for a scholarship, please do not also register for the conference online.  

Register today!

Sign up for conference e-Alerts.

Coping brochure.jpg


Coping with Scleroderma

An updated brochure (January 2019) that addresses Coping with Scleroderma has been posted on the Scleroderma Foundation website.  [scleroderma.org > patients & newly diagnosed > brochure downloads]

The information in the brochure is intended to help people affected by scleroderma learn to cope with their disease and to live life as fully as possible.  The brochure includes hints for dealing with the process of diagnosis, the actual diagnosis, and emotional responses.

The Scleroderma Foundation thanks Elaine Furst, R.N., B.S.N., M.A., of Los Angeles, California, for her assistance in preparation of this brochure.

scleroderma.org/downloads

Reach for the Cure Virginia Steen

Virginia Steen, M.D.


Reach for the Cure

“There’s never enough new researchers.  The availability of funding absolutely directs young investigators into what field they’re going to be in.  And, that’s happening.  We’re doing pretty well with some of the clinical research, but it’s not funded by the National Institutes of Health. It’s because of the Scleroderma Foundation.  It just needs to happen more,” Virginia Steen, M.D., Georgetown University Hospital.

The need is great.  The time is now.  The choice is yours.
Please give generously: www.scleroderma.org/reachforthecure

SF Logo Standard JPG


Call for Nominations

The Scleroderma Foundation seeks to expand its National Board membership among those who are actively involved at the chapter level and have expertise in: fundraising/development, social media/technology, accounting/finance, human resources, nonprofit boards, and general business. Retired and non-practicing health care professionals will also be considered. The deadline is March 22, 2019.

To suggest a candidate for consideration, please complete the online form: www.scleroderma.org/boardcandidates

Clincal Trial Update/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 two centers in the United States, University of Pittsburgh Medical Center (cmz15@pitt.edu) and Hospital of Special Surgery (McCullaghE@HSS.EDU), 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
  • Have 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 clinicaltrials.gov and www.forbius.com.

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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