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| eLetter #743 | December 29, 2017 |
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Holiday Hours
In observance of New Year's Day, the Scleroderma Foundation National Office is closed January 1, 2018.
Friday, December 29, 2017, we are open until 5 p.m. Eastern Time to receive year-end donations via telephone. Donations may also be made online. And, any donation received by mail postmarked December 31, 2017, will be processed as a 2017 donation.
donate securely online
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Finding Calm in the Storm
In this recording from the Scleroderma Foundation's National 2017 Patient Education Conference,
Ron Sasso, M.S., L.P.C., helps viewers better understand and learn about 1) how stress affects the body; 2) the role mindfulness can play in recognizing the early signs of stress; 3) SUDS (subjective units of discomfort scale) to monitor anxiety and stress levels; 4) relaxation techniques that are easy to implement to help reduce anxiety and stress levels; and, 5) the importance of hope and remaining calm when facing the storms of life.
watch video
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Using Your Voice to Advance Research and Improve Care:
Tips for Effective Advocacy and Congressional Outreach
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Webinar: The 20 Percent
Scleroderma Man
FOR MEN ONLY
January 18, 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 - to join meeting
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Wildflowers Abundant in the Garden of Systemic Sclerosis Research, While Hopeful Exotics Will One Day Bloom
By Lesley Ann Saketkoo, M.D., M.P.H.
This open access editorial, published in Rheumatology by Oxford University Press, refers to functional disability and its predictors in systemic sclerosis: a study from the DeSScipher project within the EUSTAR group, Veronika Jaeger et al., doi: 10.1093/rheumatology/kex182.
read more
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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
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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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Three Days Left to Make a Difference!
Thank you for your commitment to the Scleroderma Foundation and to the individuals affected scleroderma who rely on us. Your support and generosity made a difference in 2017, and we hope you will continue to stand with us in 2018.
Please help us ring in the new year with a meaningful year-end gift today.
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| Clinical Trial Update |
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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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