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Scleroderma Foundation
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eLetter #806 | March 22, 2019  

2019 Conference Video Promo


Register Today for the National Patient Education Conference

July 19-20-21, Chicago, Illinois

Get a feel for conference, watch a brief video!

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 applied for a scholarship, please do not also register for the conference online.  Scholarship notifications will be sent mid-April.)

Register today!

Sign up for conference e-Alerts.

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


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.

read the full study

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: scleroderma.org/steppingout

Ticket to Work - WISE 2018


Achieving Financial Independence with Ticket to Work and an ABLE Account

Webinar: Wednesday, March 27, 3 - 4:30 p.m. E.T.

Register now for the March WISE webinar
and learn more about:

  • How ABLE accounts may help certain people with disabilities and their families save for the future while protecting eligibility for public benefits
  • Updates and changes to ABLE programs that may help you save more money
  • How an ABLE account and Social Security's Ticket to Work (Ticket) program can help you achieve financial independence through work

Register today: https://choosework.ssa.gov/wise

FDA Public Meeting April 2019


FDA Public Meeting - Patient Perspectives on the Impact of Rare Diseases:  Bridging the Commonalities

The U.S. Food & Drug Administration will host a public meeting on April 29 to obtain patients' and caregivers' perspectives on the impacts of rare diseases on daily life and to assess commonalities that might help the Agency and medical prduct developers further understand and advance the development of treatments for rare diseases.  Patients and caregivers are strongly encouraged to participate either in-person or remotely. 
  • Monday, April 29, 1 - 5 p.m. E.T.
  • FDA's White Oak Campus, 10903 New Hampshire Avenue, Building 31 Conference Center, Room C, Silver Spring, Maryland
  • Click here to register by April 15

If you are unable to attend in person, submit comments to the docket, or join by webcast.  To learn more, visit the meeting page or view the Federal Register notice.

myPHteam logo


Can You Relate?

myPHteam judgement free

Connect in a judgment-free place:
https://goo.gl/j3WTer

Juvenile Scleroderma Brochure Update 2019


Juvenile Scleroderma

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

The first thing a parent must understand is which form of scleroderma their child has. Doctors divide childhood scleroderma into localized and systemic forms, which have very different features. Localized forms of scleroderma are the most common in childhood and are addressed in this brochure.

The Scleroderma Foundation thanks Thomas J. Lehman, M.D., Hospital for Special Surgery, for his assistance in preparation of this brochure.

scleroderma.org/downloads

RFTC Bill & Cyndy Martin


Reach for the Cure

"Research is the great hope to save the patient's life,"
Bill Martin.

Cyndy Martin was diagnosed with diffuse scleroderma in 2010. Her husband, Bill, took action and fought back by joining the Scleroderma Foundation’s national board of directors and by making a donation to Reach for the Cure.

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

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 (cmz15@pitt.edu), Hospital of Special Surgery (amdemicaelb@HSS.EDU), and University of Pennsylvania (tlig@pennmedicine.upenn.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
  • 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 clinicaltrials.gov and www.forbius.com.

Localized Scleroderma Clinical Research Trial

If you or someone you know have been clinically diagnosed with localized scleroderma or morphea that is difficult to control/resistant to treatment, you may be interested in participating in a Phase 1 clinical research trial for an experimental gene therapy.

  • Participant must be at least 18 years of age or older
  • Study-related dermatologic examination and laboratory studies performed at no charge
  • Investigational medication supplied for this 52-week study
  • Reimbursement provided for travel and/or out-of-pocket expenses for qualified participants

To learn more, contact Paddington Testing Company, Inc. at (215) 563-7330.
More information is available at https://clinicaltrials.gov/ct2/show/NCT03740724.

 
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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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