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Scleroderma Foundation
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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

 YouTube Sasso 2017

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

YouTube Legislative Advocacy Dec 11 2017

Using Your Voice to Advance Research and Improve Care:
Tips for Effective Advocacy and Congressional Outreach

Watch this recording of a presentation by Philip Goglas and Dane Christiansen of Health and Medicine Counsel of Washington (HMCW), who advise the Scleroderma Foundation on important matters of public policy and legislation that affect people with scleroderma and related disorders.

watch recording

Join the Next Advocacy Webinar, January 22:
Public Speaking and Letter Writing

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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

 Rheumatology Oxford

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

 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

 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.

sign up for e-alerts

 EOY Appeal 1 eLetter

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.  

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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