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Scleroderma Foundation
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eLetter #819 | June 21, 2019  

Twitter Chat World Scleroderma Day 2019 Actelion


Twitter Chat to Prepare for World Scleroderma Day
Tuesday, June 25, 11:30 a.m. Eastern Time

In advance of World Scleroderma Day, join a Twitter Chat to discuss scleroderma in young people, earlier diagnosis, the link between scleroderma and pulmonary hypertension, and increasing awareness of scleroderma.

In addition to the Scleroderma Foundation (@scleroderma), the panel includes Dinesh Khanna, M.D., M.Sc., (@sclerodermaUM) of Michigan Medicine, Amanda Lawrie-Jones (@accessibilityLJ), who has scleroderma and leads a support group, and a representative of the Federation of European Scleroderma Associations (@fscleroderma). 

Participate in the chat by following the hashtag #WorldSclerodermaDayChat.

2019 Awareness Know the Face of Scleroderma Amy G


Know the Face of Scleroderma
June is Scleroderma Awareness Month

“Although I am faced with obstacles daily that try to break my spirit, I will not let this disease dictate my life path and the stops I make on the way. I just might have to take a few more stops than I would have liked.”

Read Amy's story

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

Hosted by the American Thoracic Society as part of "Scleroderma Week at the ATS" and in conjunction with PAR partner the Scleroderma Foundation.  Presented by Kristin Highland, M.D. of Cleveland Clinic.

REGISTER TODAY

Tracy Frech MD MS Headshot

Tracy Frech, M.D.


Emergencies in Scleroderma
National Patient Education Conference Workshop, July 19-21, 2019, Chicago

In a workshop at the National Patient Education Conference, Tracy Frech, M.D., M.S., discusses scleroderma renal crisis, digital ischemia, severe unremitting abdominal pain, concern for infection on immuno-suppression medications, and change in respiratory symptoms. Attendees will learn strategies for management and prevention. Time is set aside for questions and group discussion.

REGISTER TODAY (late fee applies as of June 25)

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 for children whose parent has scleroderma, and for other young people whose lives are affected by the disease.

KGS2 teaches children and teens and their caregivers 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 as of June 25)

myPHteam logo


myPHteam

Many people living with scleroderma are also living with pulmonary hypertension. PH is high blood pressure in the arteries that carry blood from the right side of the heart to the lungs. It's considered a lung disease, while hypertension is considered a cardiovascular disease.

Read more about the history and prevalence

Stepping Out Tri-State 2019 Boy


Where Are You Stepping Out This Weekend?

Better yet, WHY are you Stepping Out to Cure Scleroderma this weekend?

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.

If online registration is closed, please sign up in person at the walk site.

June: Virtual Plymouth MA

June 22: Chesapeake VACincinnati 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

CLINICAL TRIAL INFORMATION

Cumberland Pharmaceutical Heart  

Research Participation Opportunity

If you are an adult with Systemic Sclerosis (SSc), 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.

 
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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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