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Scleroderma Foundation
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eLetter #737 | November 17, 2017  
 YouTube Stem Cell Transplants - A Patient's Perspective

Video: Stem Cell Transplants - A Patient’s Perspective

Stem Cell Transplants have been a hot scleroderma topic since 2001 and are offered today both in and outside of clinical trials. At the Scleroderma Foundation's 2017 National Patient Education Conference, Bill & Cyndy Martin explained what it is, how it works, and who may benefit.  In addition, one patient’s experience with Hematopoietic Stem Cell Transplant is shared.

watch video

John Varga M.D. Lifetime Award 2017

Lifetime Achievement Award - John Varga, M.D.

John Varga, M.D., internationally renowned scleroderma researcher and clinician, and professor of medicine at Northwestern University in Chicago, was presented with the Lifetime Achievement Award, the Scleroderma Foundation's highest honor.  With more than a decade of service as Chair of the foundation’s Medical & Scientific Advisory Board, Dr. Varga led the organization through an unprecedented period of scientific advancement in scleroderma research.  He played a pivotal role in shaping the foundation’s research program, especially creation of the “Early Career Investigator Workshop” and establishment of the Scleroderma Collaborative Research Grant.  His translational laboratory research aligns perfectly with the foundation’s message that as a prototypical fibrotic disease, scleroderma research has impact on millions of people around the world who have a variety of fibrotic diseases.

 ACA Open Enrollment 2018

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

JoinMe webinar

Grassroots Advocacy Training

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.  
watch webinar one

On November 27 at 2 p.m. (Eastern) log in for webinar two, "Preparing and Sharing your Elevator Speech."  
Integrative Medicine ATS

Integrative Medicine (Complementary and Alternative Medicine) for the Lungs

The National Center for Complementary and Integrative Health defines integrative medicine as bringing together conventional (usual or mainstream care or “Western” medicine) with complementary traditional/ancient medical treatments in a coordinated way. In the United States, an estimated 38 percent of adults (about 4 in 10) and 12 percent of children (about 1 in 9) are using some form of complementary and/or alternative medicine. (From the American Thoracic Society.)

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Holiday Health with an Autoimmune Condition

Wednesday, November 29th @ 8:00PM Eastern Time
Tis the season for peace, love, and joy, but between the winter weather, holiday stress, and celebratory gatherings (where you're not exactly in control of the menu), it can be a difficult time to keep flares at bay! This year, NeedyMeds is bringing in an expert– clinical nutritionist and ICHWC-certified health coach Tamara Wilson of Pack Health– to help you out. Preregister here to let Tamara know what questions you have, and we'll make sure they're covered at this exclusive online event.

join the webinar

 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

Giving Tuesday 2017 unselfie

Giving Tuesday is Nov. 28

#GivingTuesday is Nov. 28. Download the #unselfie sign, write your reason for giving to #curescleroderma, take a pic and post on Facebook and Twitter!

download the unselfie

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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