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Scleroderma Foundation
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eLetter #735 | November 3, 2017  

YouTube Pope 15% Rule

Video - The 15 Percent Rule

Other than Raynaud’s, gut involvement, and digital ulcers, many scleroderma features occur in 15 percent of patients. The 15 percent rule helps your health care providers know how often features such as complications from ulcers, interstitial lung disease, pulmonary hypertension, arthritis, Sjogren’s, muscle involvement, and heart involvement occur. This is a practical way to understand what is happening in scleroderma organs.

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Maria Trojanowska PhD Boston University

Scleroderma Researcher Profile

The Scleroderma Foundation is funding research by Maria Trojanowska, Ph.D. of Boston University Medical Center into new treatment options for PAH (pulmonary arterial hypertension) because the disease remains poorly managed especially in patients with rapid progression.  As a result of her foundation funded research, Dr. Trojanowska says, “Successful therapeutic targeting of pulmonary hypertension by dimethyl fumarate in experimental models led to a clinical trial in SSc-PAH patients.”

scleroderma program at Boston University

 ACA Open Enrollment 2018

Open Enrollment Ends Dec. 15 for 2018 Health Insurance Under ACA

If you need health insurance for 2018 via the individual marketplace of the Affordable Care Act, the open enrollment period is now through December 15.  Anyone who doesn't have coverage through a job, Medicare, Medicaid, the Children's Health Insurance Plan (CHIP), or other qualifying coverage is eligible to apply.  Visit the HealthCare.gov website to learn more and sign up.

HealthCare.gov

JoinMe webinar

Grassroots Advocacy Training - Recording

Public policy advocacy on behalf of people affected by  scleroderma at both the state and federal level is crucial to making a difference in their lives.  The Scleroderma Foundation now offers monthly grassroots advocacy training webinars.  Watch the recording of webinar one, "Grassroots Advocacy Overview,"  from October 23, 2017.
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On November 27 at 2 p.m. Eastern log in to https://join.me/scleroderma.org for webinar two: "Preparing and Sharing your Elevator Speech."
Leni Schulz Individual Fundraiser of the Year 2017

Individual Fundraiser of the Year

Scleroderma has struck twice in Leni Schulz’s family with both her mother and her sister battling the disease.  For 14 years, Leni Schulz has led the Boardman, Ohio Stepping Out to Cure Scleroderma walk for the Scleroderma Foundation Ohio Chapter, which consistently raises around $50,000 per year.  Leni also fundraises at health fairs, she organizes dinners and bake sales, and even finds time to serve as a support group leader.  With more than $400,000 raised by her efforts, Leni Schulz is a wonderful example of what someone can accomplish for a cause when love and compassion are the driving forces.

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Thermometer Wool Cap

17 Ways to Keep Your Home Warm Without Blasting the Heat

This article from the Huffington Post provides helpful hints to weatherize your house and make heating your home more cost efficient.

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 phildelphia Patient Ed save the date 2018 

2018 National Patient Education Conference

Sign up for e-Alerts to stay up to date on the 2018 National Patient Education Conference in Philadelphia, Pennsylvania, July 27-29.

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2017 support group retreat cropped.jpg

Find a Support Group

Connecting with others who have scleroderma is a positive action that can make a world of difference in coping with a chronic disease.  Support groups offer a safe environment to share experiences and information and to seek advice and encouragement.  It's also a great way to make new friends.  The Scleroderma Foundation provides assistance to support groups and maintains a close relationship with their leaders.  Follow the link below to find a scleroderma support group near you.  

find a scleroderma support group

Clinical Trial News

 
Cumberland Pharmaceutical Heart

Research Participation Opportunity

Cumberland Pharmaceuticals is conducting a research study to determine whether a new 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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