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Scleroderma Foundation
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eLetter #817 | June 7, 2019  

2019 Awareness Know the Face Toolkit


Awareness Toolkit

"Know the Face of Scleroderma"
June is Scleroderma Awareness Month

To help you raise awareness throughout June, we've created a toolkit with sample posts and visuals to share on your social media channels.  Included are cover photos for Facebook and Twitter, visuals and text, plus profile picture frames for Facebook.

Download the images from SclerodermaAware.org

MUSC Feghali Bostwick and Baker Frost

(L-R) Carol Feghali-Bostwick, Ph.D., & DeAnna Baker Frost, M.D., Ph.D.


Higher Estrogen Levels Linked to More Severe Disease in Scleroderma

Carol Feghali-Bostwick, Ph.D., and DeAnna Baker Frost, M.D., Ph.D., of the Medical University of South Carolina, have reported findings from their research that indicate estradiol, a type of estrogen, appeared in higher levels in older men who had scleroderma than in women with scleroderma after menopause.  Their findings indicate that men who had elevated levels of estradiol also had more severe disease and heart involvement and a greater risk of death.  

Read more in "MUSC Catalyst News"

Dr. Richard Silver

Richard Silver, M.D.,
Medical University of South Carolina


Understanding and Living with Scleroderma as a Man

Workshop with Richard Silver, M.D., at the
National Patient Education Conference
July 19-20-21, Chicago, Illinois

Scleroderma affects men less often than women. When it does, men with scleroderma face certain challenges that often impact their daily lives. Various aspects of men with scleroderma will be discussed in an informal setting with ample time for Q&A.

REGISTER TODAY for the National Conference.
Late fee applies after June 24. 

Capitol Hill Day 2018 Meeting


Apply to Attend Capitol Hill Day 2019

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

Capitol Hill Day provides you with the opportunity to educate policy makers in person about scleroderma-related issues important for continued scientific research.  Of critical importance in 2019 is our drive to re-list  scleroderma as an approved condition eligible for research funding through the Department of Defense’s Peer-Reviewed Medical Research Program.

Priority is given to applicants whose Representative serves on relevant committees. 

Scholarships are available to offset costs for travel and accommodations.  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

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.

REGISTER TODAY (late fee applies after June 24)

Hope Raisers IIa


Be a Hope Raiser!

Hope Raisers make a difference in the lives of individuals who have scleroderma in three ways.  First, they raise money by hosting fun events like costume parties or by participating in other events like marathons or 5K runs.  Second, they spread awareness about scleroderma.  Every time they ask someone for a donation or to participate in their fundraising event, they're talking about scleroderma and that connects more people to our cause.  And third, they raise hope.  Every dollar raised is a big deal to individuals who have scleroderma. The monies pay for emotional support and disease education at the same time they fund research to discover the cause, understand the mechanism, and overcome scleroderma forever.  

Learn more about becoming a Hope Raiser!

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 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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Scleroderma and PAH?

On June 19 at 7 p.m. Eastern, 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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