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Scleroderma Foundation
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eLetter #748 | Feruary 2, 2018  
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2018 Capitol Hill Day Application

CALLING ALL ADVOCATES!

The Capitol Hill Day 2018 application is now available.  Included in the application form is a request for scholarship assistance. Please note that an application is required by everyone who is interested in participating—whether you’re applying for a scholarship or not, if you are local to the Washington, DC area, or if you’ve represented the Scleroderma Foundation as a Capitol Hill Day advocate many times. 

We are especially looking for advocates from certain voting districts in California, Florida, Indiana, Kentucky, Louisiana, North Carolina, Oklahoma, Oregon, Tennessee, Vermont, Washington, and West Virginia.  Why, you ask?  It’s all in the application. 

Deadline to apply (scholarship and non-scholarship) is Wednesday, February 28, 2018. 

To learn more about what patient advocates actually do (what a day on Capitol Hill is like), please join our webinar on Monday, February 26 at 2 p.m. Eastern.  Go to: https://join.me/scleroderma.org; dial 302-202-5900; enter conference ID 710-462-255.

More information about upcoming and previous our grassroots advocacy training webinars may be found on the Advocate Resources page. 

 2018 Conference Save the Date 180x270 

2018 National Patient Education Conference - July 27-29, Philadelphia

ONLINE REGISTRATION IS NOW LIVE

Register online for the 2018 National Patient Education Conference at scleroderma.org/conference. If you prefer to register by mail, the conference website also has a link to a PDF form to download.

You may also download a scholarship application
The application deadline is March 21.

Hotel & travel information is also online. Space is limited, so book your hotel room early. To receive the group room rate of $169, book your hotel room directly with Loews Philadelphia HotelCall the hotel, (888) 575-6397, and mention the Scleroderma Foundation conference, or book your room via Loews' online system.

more conference info

Public Speaking Letter Writing

Grassroots Advocacy:
Public Speaking Video

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

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

 Inspire 35,000

Inspire

Join the scleroderma online community at Inspire.com, where nearly 40,000 people who are affected by scleroderma discuss every day issues of living with the disease.  

join inspire

 support group square

Support Groups

Joining a scleroderma support group enables a person with scleroderma to meet and exchange information with others who have similar problems, in addition to learning more about the disease.  There are many Foundation affiliated support groups around the country, although some areas are less well represented.

Each week this eLetter will highlight support groups located in different parts of the country.  In New York, Connecticut, and New Jersey, an area managed by the Tri-State Chapter, there are 14 groups.  Three in Connecticut, two in New Jersey, and nine in New York State.  The chapter also manages a men's Facebook group, called ScleroMen.  

read more

 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

 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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