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Scleroderma Foundation
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eLetter #745 | January 12, 2018  
 MLK Jr

Martin Luther King Jr. Day

In observance of Martin Luther King Jr. Day the Scleroderma Foundation national office will be closed Monday, January 15, 2018. 

www.scleroderma.org

 SCOT Trial

Scleroderma:

Cyclophosphamide or
Transplantation

SCOT Trial Statement

The Medical & Scientific Advisory Board (MSAB) of the Scleroderma Foundation released a statement on January 8, 2018, regarding the results of the National Institutes of Health (NIH) supported multi-center SCOT (Scleroderma: Cyclophosphamide or Transplantation) trial, which were published in the January 4, 2018, issue of the New England Journal of Medicine.

read the MSAB statement

 Assisted Yoga for scleroderma Reno

Assisted Yoga for Scleroderma

View videos online that illustrate the assisted yoga for scleroderma.  This practice consists of seated and reclining poses with two complete sections for your hands and avideo on digestive practices for all levels.  All are performed with the assistance of a caregiver, with complete instruction for both the individual and the caregiver.  Each practice is presented in three different levels of assistance:  minimal, moderate, and maximum.  

watch video

Public Speaking Letter Writing

Public Speaking & Letter Writing
Webinar on Grassroots Advocacy
Monday, January 22, 2018; 2 p.m. Eastern

Learn gestures and body language, speaking to diverse audiences, visual aids and props, and delivering technical information. Go to https://join.me/scleroderma.org, dial 302-202-5900, enter conference ID 710-462-255.

join webinar

 20 percent Michigan webinar

The 20 Percent Scleroderma Man
WEBINAR: 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

 Arthritis Care & Research

Impact of Radiation Therapy on Scleroderma and Cancer Outcomes in Scleroderma Patients with Breast Cancer

This article is published online in the journal "Arthritis Care & Research" (American College of Rheumatology).  

read more

 UCHealth logo red square

Scleroderma's Threat is More Than Skin Deep

An article by Tyler Smith of UCHealth (University of Colorado) features Aryeh Fischer, M.D., discussing scleroderma and interstitial lung disease among other aspects of scleroderma.  

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

 Voice Fall 2017 Cover

Become a Member of the Scleroderma Foundation

Become a foundation member and receive exclusive benefits such as the "Scleroderma Voice," a quarterly magazine that features news and stories from patients and scleroderma experts.  Join today for just $25! ($35 outside the U.S.)    

join 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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