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Scleroderma Foundation
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eLetter #747 | January 26, 2018  
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2018 National Patient Education Conference - July 27-29, Philadelphia

SCHOLARSHIP APPLICATION
The scholarship application for the National Patient Education Conference is now available for downloadThe application deadline is March 21.  Incomplete or late applications will not be considered.  Scholarships are available for adult patients, children with scleroderma, and parent caregivers of minor children with scleroderma. Priority is given to applicants attending for the first time.   download scholarship application

HOTEL & TRAVEL INFORMATION
Hotel and travel information for the 2018 National Patient Education Conference is now online.  Receive the discounted group rate ($169) when you reserve your hotel room directly with Loews Philadelphia Hotel by saying you're attending the Scleroderma Foundation conference. Space is limited, so reserve early.  Call the hotel, (888) 575-6397 or register online.

read more

 DC Capitol Dome Cherry Blossoms portrait

2018 Capitol Hill Day

April 16-18, 2018, is Capitol Hill Day in Washington, D.C.  Applications and scholarship information will be announced via this eLetter on February 2.  Read  information online about H.R. 4638 National Commission on Scleroderma and Fibrotic Diseases Act of 2017, the bill we currently have before Congress.

To learn more about the foundation's Capitol Hill Day experience (and how to be well-prepared), check out the Grassroots Advocacy Training webinars featured on the Advocate Resources page and the foundation's YouTube channel. Upcoming webinars will focus specifically on what to expect on Capitol Hill and strategies for an impactful meetings with elected officials

read more

Public Speaking Letter Writing

Grassroots Advocacy:
Public Speaking Video

Watch a recording of the January 22, 2018, webinar on public speaking that addresses gestures and body language, speaking to diverse audiences, visual aids and props, and talking about the disease. 

watch video

 20 percent Michigan webinar

The 20 Percent Scleroderma Man
Webinar For Men Only
NEW DATE: February 8, 2018, 7-9 p.m. Eastern

An educational webinar for males only who have scleroderma presented by rheumatologist, Dr. Vivek Nagaraja, from Michigan Medicine. Topics will include gender specific aspects of scleroderma.

to register

 YouTube 2016 Poole Hand & Face

Virtual Support Group Meeting
January 27, 2018, 11 a.m. - 12:30 p.m. Eastern

Presentation by Janet Poole, Ph.D., O.T.R./L.
"Hand & Face Exercises & Management of Daily Skills." Learn exercises to improve movement/function in the hands, face & mouth! 
Watch the video first.

join meeting

McMasters Univ Demystifying Medicine Part II

Demystifying Medicine, Part II

In September 2013, McMaster University started a novel cross-disciplinary 4th year undergraduate course on selected topics from the McMaster Demystifying Medicine Seminar Series (www.demystifyingmedicine.com). Their main task was to generate educational content in the form of short presentations, animations, interviews, skits or by other creative ways to help increase understanding of complex clinical and biomedical material. This video is about scleroderma and is the second of two parts.

watch the video

 PAH Voice Reprint Fall 2017 Med-IQ Gilead

PAH in Systemic Sclerosis
Learn More in a Special Article
from Scleroderma Voice

Pulmonary arterial hypertension (PAH) is a serious but rare condition that develops in approximately 8 percent  to 12 percent of patients with systemic sclerosis (SSc).  Learn more about risk factors, screening tests, and treatment options for PAH in a special article that appeared in the Fall 2017 edition of Scleroderma Voice magazine, the member magazine of the Scleroderma Foundation.  The article includes a questionnaire for you to complete and share with your physician.  

read about PAH in SSc

 myPHteam logo

myPHteam

Pulmonary Hypertension (PH) occurs in roughly 20 percent of scleroderma patients. Connect with others who are living with PH and who really understand what you’re feeling beneath the surface with myPHteam.

connect with myPHteam

 Stepping Out Logo Resized

Stepping Out 2018

Help us take one step closer to finding a cure for scleroderma!  Join us at a Stepping Out to Cure Scleroderma walk or run near you.  Gather your family, friends, and coworkers and form a team.  Create a fundraising page on the Stepping Out website and use the online tools to request donations and manage your team. 

Find a Stepping Out walk or run near you at www.scleroderma.org/steppingout.

Clinical Trial Update
Cumberland Pharmaceutical Heart

Research Participation Opportunity

Cumberland Pharmaceuticals is conducting a research study to determine whether a drug product called ifetroban will prevent cardiomyopathy in patients with diffuse scleroderma or pulmonary arterial hypertension associated with scleroderma. Eligible subjects will be reimbursed for their time and travel.

For more information, please call 615-627-4121 or email bkaelin@cumberlandpharma.com.

 
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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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