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Scleroderma Foundation
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eLetter #736 | November 10, 2017  

 YouTube My Child has Scleroderma Torok 2017

Video -
My Child has Scleroderma

Kathryn Torok, M.D., at the Scleroderma Foundation's 2017 national Patient Education Conference presented an overview of pediatric scleroderma: pediatric onset localized scleroderma (LS) and systemic sclerosis (SSc).  The video focuses on: 1) Definition and background information on pediatric scleroderma and subtypes; 2) General clinical evaluation of pediatric LS and SSc; 3) Changes to expect early and then later in disease in both pediatric LS and SSc; and 4) General management: medications and supportive measures (physical/occupational therapy, nutrition, dental care etc).

watch video

Peter Wermuth PhD

Scleroderma Researcher Profile

Peter Wemuth, Ph.D. of Thomas Jefferson University received a 2017 research grant from the Scleroderma Foundation to investigate biomarkers to aid in the diagnosis of SSc or Raynaud Phenomenon.  

"Finding biomarkers to monitor treatment effectiveness in systemic sclerosis could save lives," says Dr. Peter Wermuth.  "Discovering ways to predict systemic sclerosis progression would be invaluable in developing personalized treatments."

scleroderma foundation research grant program

 Scleroderma_The Truth_short film

Messenger of Hope Award

The 2017 Messenger of Hope Award was presented to Virginia Orzel, associate communications professor and associate chair at The College at Brockport in Brockport, NY.  Ms. Orzel used her extensive experience in film and video production to create a documentary entitled “Scleroderma: The Truth,” that offers an overview of scleroderma and shares the journey of three Rochester, NY-area scleroderma patients.  Motivated by her aunt’s battle with scleroderma, Ms. Orzel has been an active member of the Scleroderma Foundation’s Greater Rochester Support Group for 10 years.  
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Nursing Survey -
American Thoracic Society

The Nursing Assembly of the American Thoracic Society and the International Nursing Research Priorities: CARES: [Critical care, Adult Respiratory Health, and Sleep] committee would like for you to take part in a survey to determine areas of focus for nursing research in relation to pulmonary, critical care and sleep issues.

take the survey

 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

 

medicare open enrollment webinar Oct 2017

Webinar - Help for Medicare Open Enrollment

State Director of SHINE (Serving the Health Insurance Needs of Everyone), Cynthia Phillips, answers all your pressing questions about Medicare Open Enrollment such as: What exactly is Open Enrollment? Who can make changes and how? What do I need to know about the Medicare plan finder web site? How can I change plans after Open Enrollment closes? Watch this webinar for all these and more!

watch video

JoinMe webinar

Grassroots Advocacy Training - Recording

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.
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On November 27 at 2 p.m. Eastern log in to https://join.me/scleroderma.org for webinar two: "Preparing and Sharing your Elevator Speech."
 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

 
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Corbus Pharmaceuticals Reports Phase 2 Study Results for Anabasum

Corbus Pharmaceuticals Holdings, Inc., presented six-month safety and efficacy data from the open label extension dosing in its ongoing Phase 2 study of anabasum ("JBT101-SSc-001") in subjects with diffuse cutaneous systemic sclerosis ("SSc").  The results were presented at the American College of Rheumatology Annual Meeting in San Diego, CA
Barbara White, M.D., Chief Medical Officer of the Company stated, "The consistency and magnitude of efficacy seen with longer dosing increases our confidence that anabasum could offer a meaningful benefit to patients with SSc. The speed and degree of improvement in multiple efficacy outcomes at this stage in the open-label extension of our Phase 2 study exceeds that previously reported in other clinical trials or registries in SSc."

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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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