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Scleroderma Foundation
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eLetter #815 | May 24, 2019  

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Important News on SSc-ILD Treatment from the ATS Scientific Meeting

Representatives of the Scleroderma Foundation attended the American Thoracic Society’s annual scientific meeting in Dallas where positive results of a clinical trial for systemic sclerosis-associated interstitial lung disease (SSc-ILD) were presented to healthcare professionals and researchers. Boehringer Ingelheim Pharmaceuticals released data from their successful phase III clinical trial, SENSCIS™.

Learn more about the trial and its results from the press release issued by Boehringer Ingelheim.

Read the New England Journal of Medicine primary manuscript.

Southern Idaho Support Group five 2019


Idaho Scleroderma Awareness Day

As June and Scleroderma Awareness Month approach, members of the Southern Idaho Scleroderma Support Group urged Idaho Governor Brad Little to issue a proclamation adopting June 29, which is World Scleroderma Day, as Idaho Scleroderma Awareness Day. Pictured in the photo at left are: (L-R) Tosha Johnson, NP, Katy Koval, Dee Burlile, Selina Paul, and Tony Holladay.

The 2019 awareness theme is "Know the Face of Scleroderma."  Check Facebook and Twitter for awareness posts to share with your own social media networks.

DC Capitol Dome Cherry Blossoms portrait


Capitol Hill Day 2019

Apply by June 10 to attend Capitol Hill Day
Washington, D.C., September 16-18, 2019

The Scleroderma Foundation’s Advocacy program provides you with the opportunity to meet policy makers on Capitol Hill to educate them and to generate awareness about scleroderma-related issues that are important for continued scientific research.  Of critical importance in 2019 is our drive to have scleroderma re-listed as an approved condition eligible for research funding through the Department of Defense’s Peer-Reviewed Medical Research Program.

Apply today to attend Capitol Hill Day and represent the scleroderma community.  Priority is given to those applicants who reside in Congressional districts whose Representative serves on the relevant committees to our legislative priorities. 

Scholarships are available to offset travel and accommodations costs.  Apply by June 10. 

Learn more and download application

NeedyMeds


All You Need to Know About Scleroderma Lung Involvement

Webinar: June 18, 2019; 11:30 a.m. - 12:30 p.m. ET

Don't miss out as Scleroderma Foundation Medical and Scientific Advisory Board Member Aryeh Fischer, M.D., an Associate Professor at the University of Colorado School of Medicine, shares up-to-date and crucial information about this chronic condition affecting 300,000 Americans. This webinar covers need-to-know facts about scleroderma lung involvement, resources available to manage this diagnosis and the resources available from the Scleroderma Foundation that can help you on your journey towards health.

register today

2019 National Conference Chicago Design 3


Opening Keynote
National Patient Education Conference
July 19-20-21, Chicago, Illinois

Endure: The Life and Art of Paul Klee
Richard M. Silver, M.D.,
Medical University of South Carolina

Paul Klee, one of the 20th Century’s most important artists, lived with systemic sclerosis (scleroderma). Klee’s life was fascinating and, at times, tragic. His art is an expression of his time and the disease he so bravely endured.

Watch a brief video about conference  

REGISTER TODAY

KGS2 Kids Get Scleroderma Too logo Conf 2019


Kids Get Scleroderma, Too!
Kids, Teens, & Parents Program at National Conference

Kids Get Scleroderma Too (KGS2) is offered as part of the Scleroderma Foundation's National Patient Education Conference, which takes place July 19-20-21, 2019 in Chicago, Illinois. KGS2 is an exceptional program for children and teens, ages 5 to 17, who have scleroderma, and for their siblings, or children with a parent who has scleroderma, and for other young people whose lives are impacted by the disease.

KGS2 is designed to help children and teens and their caregivers learn more about scleroderma in a fun environment that promotes making new connections. The entire weekend is filled with engaging, fun workshops and activities specific to their needs.

learn more

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Where are You Stepping Out?

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 advance the Scleroderma Foundation's three-fold mission of support, education, and research.

June: Virtual Plymouth MA

June 01: Boardman OH, Rochester NY, San Antonio TX

June 02: Albany NY, Binghamton NY, Detroit MI, La Mirada CA, Omaha NE

June 08: Columbia SC, Farmingdale NJ, Fort Collins CO, Lilburn GA, Nashville TN, Ridgefield Park NJ, Spokane WA, Toledo OH

June 09: Madison WI, Manhattan NY

June 15: Denver CO

June 22: Cincinnati OH, Highland IN, Poughkeepsie NY

June 23: Des Moines IA, Highland Park IL, Long Island NY, Westchester NY

June 29: Dallas TX, Hartford CT, Portland OR

Find more walks at scleroderma.org/steppingout

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Looking OK Does Not Mean
We Feel OK

Join a community of people living with pulmonary hypertension.

myPHteam

CLINICAL TRIAL INFORMATION

 Cumberland Pharmaceutical Heart  

Research Participation Opportunity

If you are an adult with Systemic Sclerosis, you may be eligible to take part in a research study sponsored by Cumberland Pharmaceuticals aimed at evaluating an oral study drug called ifetroban to determine if symptoms improve. To learn more about ifetroban for Systemic Sclerosis, please call (615) 627-4121 or email bkaelin@cumberlandpharma.com. Eligible subjects will be reimbursed for their time and travel.

PAID NOTICE

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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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