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Scleroderma Foundation
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eLetter #818 | June 14, 2019  

EULAR 2019


Important News From Lenabasum Phase 2 Trial Reported at EULAR

During the European Congress of Rheumatology (EULAR 2019) conference in Madrid (June 12-15), promising results were reported from the phase two trial of lenabasum.  Representatives of Corbus Pharmaceuticals, which is conducting the trial announced continued favorable safety and durable improvement in efficacy outcomes at 21 months compared to 12 months in open-label extensions of lenabasum Phase 2 studies of in systemic sclerosis (SSc) and dermatomyosistis (DM).  

Learn more about the trial in a press release issued by Corbus Pharmaceuticals

2019 Awareness Know the Face of Scleroderma Bob R


Know the Face of Scleroderma
June is Scleroderma Awareness Month

“You need to get to a hospital with doctors who know what to do. It took me 15 months to diagnose it and over 10 specialists and 30 doctors.” Bob R.

Read Bob's story

NeedyMeds


All You Need to Know About Scleroderma Lung Involvement
Webinar: June 18, 2019; 11:30 a.m. - 12:30 p.m. Eastern

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 Twitter Chat IFFGD Dietitian


Eating with Scleroderma
Twitter Chat: June 19, 2019; 3 p.m. Eastern

Be part of a Twitter Chat with Stanford Health GI Dietitian Neha Shah, M.P.H., R.D., C.N.S.C., C.H.E.S. and Lesley Saketkoo, M.D., M.P.H., of Tulane University.  Organized by the International Foundation for Gastrointestinal Disorders (IFFGD) in collaboration with the Scleroderma Foundation, as part of the IFFGD's monthly Diet & Digestive Health program, #ddhchat. 

Log on to your Twitter account Wednesday, June 19 at 3 p.m. Eastern to follow the chat @IFFGD and #ddhchat.

Submit questions in advance to iffgd@iffgd.org.

Ticket to Work - WISE 2018


Ticket to Work
Webinar: June 26, 2019; 3 p.m. Eastern

Join @ChooseWork on June 26 at 3 p.m. Eastern Time for the next WISE webinar! This month, the discussion is about Social Security’s Ticket to Work program and how it can help you on the path to financial independence through work.

REGISTER TODAY

Scleroderma-related-interstitial-lung-disease-can-be-treated


Treatment for Scleroderma Interstitial Lung Disease (ILD)
Webinar: June 27, 2019; 3 p.m. - 4 p.m. Eastern

As part of "Scleroderma Week at the ATS" and in conjunction with PAR partner the Scleroderma Foundation, the American Thoracic Society will host a webinar on Thursday, June 27 from 3 p.m. to 4 p.m. Eastern Time, titled "Treatment for Scleroderma Interstitial Lung Disease" and will be presented by Kristin Highland, M.D. of Cleveland Clinic.

REGISTER TODAY

Feghali-Bostwick Varga 2018

Carol Feghali-Bostwick, Ph.D.
& John Varga, M.D.


Toward Finding a Cure:  Exciting Recent Research Advances
National Patient Education Conference Workshop, July 19-20-21, 2019, Chicago, Illinois

Only at the Scleroderma Foundation's National Conference will you find John Varga, M.D., and Carol Feghali-Bostwick, Ph.D., side by side explaining the most recent and most exciting developments in scleroderma research. This workshop presents an overview of the Scleroderma Foundation Research Grant Program, including what “Peer Review” means.  Also included are presentations by researchers Roberta Goncalves, Deborah Winter, and Karen Ho; plus, a question and answer period.

REGISTER TODAY (late fee applies after June 24)

2018 Conference Youth


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.

REGISTER TODAY (late fee applies after June 24)

Jet Ski for Julia Hope Raiser


Jet Ski for Julia
New York to Key West and Back...Hope Raiser Event

Despite having scleroderma, Julia is a lucky 8-year-old girl, because her great uncle, Thomas Cronin, has her back.  With the help of her uncle, Julia is raising money to fund research to discover the cause, understand the mechanism, and overcome scleroderma forever.  Thomas and his best friend, Jason, are jet skiing 3,500 miles over open ocean from Shelter Island, New York (Long Island) to Key West, Florida, to the Bahamas, and back to Shelter Island. Their ultimate fundraising goal is $50,000 for research!

Thomas and Jason plan to take off at 12 noon on June 30, 2019.  Wish them luck with a donation!

scleroderma.org/goto/JetSkiforJulia

Stepping Out Logo 2018 Be Part of the Cure - Web


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 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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Scleroderma and PAH?

On June 19 at 7 p.m. Eastern Time, join Jim White, M.D., Ph.D., Professor of Pulmonary Disease and Critical Care in the Department of Medicine, University of Rochester, to learn about PAH and an opportunity to participate the CATALYST clinical trial. Register via email at CATALYST@reatapharma.com. The webinar and clinical trial are conducted by Reata Pharmaceuticals; it is not a Scleroderma Foundation sponsored event.

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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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