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| eLetter #735 | November 3, 2017 |
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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.
watch video
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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
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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
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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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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.
read more
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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.
read more
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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.
sign up for e-alerts
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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
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Clinical Trial News
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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.
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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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