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Scleroderma Foundation
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eLetter #742 | December 22, 2017  
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Holiday Hours for Scleroderma Foundation National Office

In observance of Christmas, the National Office of the Scleroderma Foundation will be closed on Monday, December 25, 2017.  And, in observance of New Year's Day, we are closed January 1, 2018.

Year-end donations may be made via telephone until
5 p.m. Eastern time, Friday, December 29.  Our website is also available 24 hours a day to receive donations.  And, any donation received by mail postmarked on December 31, 2017, will be processed as a 2017 donation.   

donate securely online

 Sandra Mintz MSN RN

Sandra Mintz, M.S.N., R.N., Appointed Incoming President of ARHP

The Scleroderma Foundation congratulates Sandra Mintz, M.S.N., R.N., on her appointment as incoming president of the Association of Rheumatology Health Professionals (ARHP).  Sandra was instrumental on the enhancement of the Foundation's annual youth conference programming.

ARHP is the membership division of the American College of Rheumatology and serves non-physician health care professionals specializing in rheumatology, such as advanced practice nurses, nurses, occupational therapists, physical therapists, psychologists, social workers, epidemiologists, physician assistants, educators, clinicians, researchers, research coordinators, and office staff.

read more

 YouTube Frech 2017 Eating Well

Eating Well: Tips for Pediatric Systemic Sclerosis

In this recording from the Scleroderma Foundation's National 2017 Patient Education Conference, Tracy Frech, M.D., covers dietary issues in systemic sclerosis (SSc) that are particularly troublesome for pediatric patients.  Further discussion focuses on the fundamentals of eating well and nutrition.

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

 NIAMS new web site 2017

Find Out What's New on the Redesigned NIAMS Website

The NIAMS (National Institute of Arthritis and Musculoskeletal and Skin Diseases) has launched its redesigned website. It employs a responsive design so it can be easily viewed on a phone, tablet, or computer. The Health Topics in English are listed in an A-Z directory, and many topics also are available in Spanish, Chinese, Korean and Vietnamese. The Grants and Funding section features an updated searchable database, along with information on the grant application process. The Labs @ NIAMS section highlights our intramural research labs, faculty, resources and training opportunities.

visit niams website

 CDC Learn More Feel Better

Self-Management Education:
Learn More Feel Better

Self-management education (SME) refers to programs that help people who have chronic conditions learn how to manage their condition and live life to the fullest. Learn more about self-management education programs for arthritis and other chronic conditions by visiting the CDC website: Learn More. Feel Better.

CDC website

 Rheumatology Advisor Pascual 12/5/17

The Future of Precision Medical Care for Rheumatic Disease

RheumatologyAdvisor.com featured an interview with Virginia Pascual, M.D., director of the Gale and Ira Drukier Institute for Children's Health at Weill Cornell Medicine, New York, discussing precision medical care for rheumatic diseases, as well as advancements in biomarker identification in systemic lupus erythematosus (SLE).

watch video

 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

 Dr. Torok

Let’s Advance Scleroderma Research in 2018!

Researchers like Katheryn Torok, M.D., are putting generous donations to work developing a platform that will lead to improved quality of life for children living with scleroderma.  

Please help us advance our mission by making a generous 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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