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Scleroderma Foundation
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eLetter #881 | September 4, 2020  

Labor Day 2020

Labor Day Holiday Observance

The Scleroderma Foundation will observe the Labor Day holiday on Monday, September 7. The National Office will be closed. Phone calls to (800) 722−4763 and emails to SFinfo@scleroderma.org will be answered on Tuesday, September 8.

Visit the Foundation's website, www.scleroderma.org, to access valuable information and resources, or go to our YouTube channel, www.YouTube.com/sclerodermaus, to watch valuable educational videos.

Scleroderma Virtual University Fall Series

Fabian Mendoza-Ballesteros, MD
Fabian Mendoza, M.D.

Manifestaciones Gastrointestinales de la Esclerodermia
Virtual University Webinar:
September 9, 3 - 4 p.m. Eastern
(2 Central, 1 Mountain, 12 Pacific)

Con Fabian Mendoza, M.D., Thomas Jefferson University

Esta charla se centrará en los síntomas gastrointestinales comúnmente asociado con la esclerodermia sistémica. El propósito de esta charla es ayudar a pacientes y familias entender las condiciones y tratamientos para los síntomas gastrointestinales.

Esta sesión de la serie de otoño se presenta exclusivamente en español. (This session of the fall series is presented exclusively in Spanish.)

REGISTRARSE AQUÍ

YouTube 2020 Virtual University September 2 D Furst

VIDEO: Pain: Its Causes and Its Treatments

Watch the recording of "Pain: Its Causes and Its Treatments" with Daniel Furst, M.D., University of California, Los Angeles, and learn where the pain of scleroderma comes from and what you can do about it. In this session the sources of pain and different strategies for managing pain depending on cause are discussed. The webinar originally aired September 2, 2020 as part of the Scleroderma Virtual University patient education fall series.

WATCH

John Varga M.D.
John Varga, M.D.

Varga Becomes Chief of Rheumatology at Michigan Medicine

John Varga, M.D., has accepted the role of Chief of Rheumatology at the Michigan Medicine Scleroderma Program. Varga leaves his position at Northwestern University Feinberg School of Medicine in Chicago.

Varga is a long-time, active member of the Scleroderma Foundation's Medical & Scientific Advisory Board and is its immediate past chair.  

MICHIGAN MEDICINE

TOSS scleroderma self management

Taking Charge of Systemic Sclerosis (TOSS)

Often, persons with scleroderma do not know other people with the disease. They might live in a state where there is no chapter of the Scleroderma Foundation, or their community might not have a support group. "Taking Charge of Systemic Sclerosis” (TOSS) is a web-based self-management program designed to help you learn about scleroderma, to manage your symptoms, and to learn strategies to help you advocate for yourself.

Knowledge and advocacy skills need to be continually woven, like a basket, into one's daily life. Register today to gain skills and confidence to manage systemic sclerosis (SSc) symptoms and to develop strategies to advocate for yourself. Peer mentors will empower you to take control of your life and your healthcare.

LEARN MORE

PFF Awareness 2020 30 facts 30 days

30 Facts in 30 Days - Pulmonary Fibrosis

September is Pulmonary Fibrosis Awareness Month. During this campaign, our friends at the Pulmonary Fibrosis Foundation (PFF) will share 30 facts in 30 days on their social media platforms: FacebookTwitter, and Instagram. Visit them and share their posts using hashtags #PFMonth and #BlueUp4PF.

PFF

World Lung Day 2020

World Lung Day is September 25

World Lung Day (WLD) is a day for lung health advocacy and action, an opportunity for us all to unite and promote respiratory health and air quality globally. The theme for 2020 is respiratory infections. Follow the link below to access the World Lung Day Toolkit, including social media posts and graphics.

WLD TOOLKIT

walk couple dog masks trees

Virtual Stepping Out eLetter

Keeping Our Promise While Staying Safe

You can help the Scleroderma Foundation keep the promise it made to everyone affected by scleroderma to provide the best emotional support, educational programs, and peer-reviewed research.

We can't miss a step because everyone is counting on us, but we need your help. Stay safe at home and fundraise virtually with effective online fundraising tools. Sign up today for a virtual fundraising event.

Virtual Fundraising Events:

STEPPING OUT

SF Logo Standard JPG

 

MSAB COVID-19 eLetter Graphic

COVID‑19 Information & Recommendations

From the Scleroderma Foundation's Medical & Scientific Advisory Board Leadership Committee
Reviewed July 1

The Foundation's Medical & Scientific Advisory Board (MSAB) Leadership Committee fully endorses recent recommendation by the American College of Rheumatology (ACR) in their “COVID-19 Clinical Guidance for Patients with Rheumatic Diseases” draft summary, which states that individuals who have rheumatic diseases, including scleroderma, who test positive for COVID-19 should temporarily discontinue sulfasalazine, methotrexate, leflunomide, immunosuppressants, non-IL-6 biologics and JAK inhibitors. The ACR COVID-19 Clinical Guidance Task Force also recommends that those who have confirmed COVID-19 may continue with anti-malarial therapies—namely hydroxychloroquine and chloroquine—and, in select circumstances, IL-6 inhibitors.

Information and recommendations from the Foundation's MSAB regarding COVID-19 and scleroderma are posted at www.scleroderma.org/covid19. This "living document" was most recently reviewed on July 1. Please check it from time to time for additional updates.

COVID‑19

2020 Scleroderma Canada Virtual Conference October

Scleroderma Canada Virtual Conference

Our northern neighbors, Scleroderma Canada, converted their annual conference to a virtual platform, which takes place October 5 through 9, 2020.  Gain insights from researchers, physicians, and professional caregivers during 15 sessions, including 3 keynote speakers. The cost is $35 (Canadian).  Early bird pricing runs until September 15. 

REGISTER

boehringer more than scleroderma kheesa

More than Scleroderma

A series of six scleroderma education webinar programs are being hosted nationally in August and September by one of the Scleroderma Foundation's partners, Boehringer Ingelheim. These programs are free and open to individuals affected by scleroderma and their family and friends. The Foundation is not managing registration and is not responsible for the content. When you register for a "More than Scleroderma" program, you are providing your contact information to a third party, Boehringer Ingelheim.

Webinar Dates (all times Eastern):

  • Monday, September 14, 6 p.m.
  • Wednesday, September 16, 7 p.m.
  • Wednesday, September 23, 3 p.m.

CLICK HERE to register or CALL (855) 415-7492

Clinical Trial Opportunity

SLS III Scleroderma Lung Study III

ENROLLMENT CLOSING October 1, 2020

SLS III is a multicenter clinical trial designed to compare two different experimental treatments for patients with Scleroderma who have lung involvement by interstitial lung disease (also known as pulmonary fibrosis). All participating patients will receive study drugs, provided at no charge to them or their insurance, for the duration of their participation in this 18-month study.

The SLS III study is being carried out at 17 different clinical research centers throughout United States and enrolling new participants through October 1, 2020.

To be eligible to participate in SLS III, patients must meet the following criteria:

  • Be at least 18 years old
  • Have systemic scleroderma which can be either the limited type (previously called CREST syndrome) or the diffuse type
  • Need to be within 7 years from their first symptoms (other than Raynaud’s phenomenon), such as puffy fingers or skin thickening
  • Have shortness of breath
  • Have evidence of lung involvement that suggests the presence of interstitial lung disease (pulmonary fibrosis)
  • Meet other eligibility criteria that a study doctor will explain to you as part of the evaluation process.

You can view more information about Scleroderma Lung Study III and obtain contact information from either our official SLS III website at the following link: Sclerodermalungstudy.org; or the ClinicalTrials.gov website by using this link: Scleroderma Lung Study III on ClinicalTrials.gov.

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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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