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eLetter #884 | September 25, 2020  

Scleroderma Virtual University Fall Series

Mary Crowe Care Dimensions
Mary Crowe, L.I.C.S.W.,
A.C.H.P.-S.W., C.D.S.

Taking the Mystery Out of Hospice and Palliative Care
WEBINAR, Scleroderma Virtual University
September 30, 3 - 4 p.m. Eastern
(2 Central, 1 Mountain, 12 Pacific)

With Mary Crowe, L.I.C.S.W., A.C.H.P.-S.W., C.D.S., Care Dimensions

Join us as the Scleroderma Virtual University fall patient education series continues. 

This program features a discussion of the common myths and misconceptions of hospice care along with an overview of the benefits of hospice and palliative care services and how to access this help.

REGISTER

YouTube 2020 Virtual University Sept 23 Yoga Balasubramanian

VIDEO: Gentle Yoga & Yogic Breathing for Scleroderma Symptom Management

Watch the video recording of "Gentle Yoga & Yogic Breathing for Scleroderma Symptom Management," originally presented September 23 by Sundar Balasubramanian, Ph.D., C.-I.A.Y.T., Medical University of South Carolina. (Part of the Scleroderma Virtual University patient education fall series.)

WATCH

Michigan Parents Online Group October 2020

Parents of Children with Scleroderma

Online Support Group
October 7, 7:30 p.m. to 9 p.m. Eastern

Is your child with scleroderma getting the medical attention he or she needs/deserves? Join us for an online support group to learn how you can help your child receive optimum and convenient medical care. We’ll start with welcome remarks and an opening icebreaker, move on to an educational session with helpful tips, and end with a closing mindful moment. Register now and find support and hope in the community.

REGISTER

Ohio Sunday Sit Down

Sunday Sitdown

Facebook Live: September 27, 1 p.m. Eastern

Join the Ohio Chapter for Sunday Sitdowns on the last Sunday of every month at 1 p.m. Eastern Time via Facebook Live. This is a time to connect with others who live with the challenges caused by scleroderma.

Please note, given the open, unsecure nature of Facebook, do not share private, personal information during this conversation.

WATCH

Advocacy Booth 2019 ConferenceAdvocacy Cowan Tri-StateAdvocacy 2018 Capitol Hill Day Todd Gilligan

Ask Your Member of Congress to Support Scleroderma Research

You don't need to leave home to make your voice heard! Take advantage of this time at home to strengthen our collective voice to educate Congress about the importance of ongoing scleroderma research.

Sign prepared letters asking your U.S. Representative and Senators to co-sponsor a bipartisan, budget-neutral bill that supports people living with all fibrotic diseases. Please complete both letters: H.R. 3446 (House), S. 2477 (Senate).

Complete the letters online and email them to advocacy@scleroderma.org. You can also print the letters and complete by hand. Scan and email them to advocacy@scleroderma.org or send by U.S. mail to Scleroderma Foundation; Attn: Advocacy; 300 Rosewood Drive, Suite 105; Danvers, MA 01923.

Encourage your family, friends, colleagues, and neighbors to complete letters to send a louder message!

PFF Awareness 2020 30 facts 30 days four

Pulmonary Fibrosis: 30 Facts in 30 Days

During September, in observance of Pulmonary Fibrosis Awareness Month, the Pulmonary Fibrosis Foundation is sharing 30 facts in 30 days on their social media channels.

Though research is promising, stem cell and cell-based therapies for PF are currently unproven and may be detrimental for patients when administered outside FDA-approved research trials.

30 FACTS

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Medication Adherence Matters BeMedWise NeedyMeds

Medication Adherence

WEBINAR: October 1, 2020; 1 - 1:30 p.m. Eastern

In October, NeedyMeds' BeMedWise program launches its 35th annual Talk About Your Medicines Month, with an important theme: Medication Adherence – On track with your meds and your health. Medication adherence is a vital part of maintaining health.

REGISTER

Tri-State Education Logo crop 

Rochester Doctor/Patient Roundtable

ZOOM: Sat., Oct. 3, 2020; 10 a.m. to 12 Noon Eastern

The Scleroderma Foundation Tri-State Chapter and Benjamin Korman, M.D., Rheumatologist and physician-scientist at the University of Rochester Medical Center is presenting a Doctor/Patient Roundtable to exchange information, ideas, and perspectives about the current status of scleroderma research and patient care.

ZOOM

 PEDRA Annual Conference 2020

PeDRA Annual Conference

2020 Virtual Event, October 22-23

Due to uncertainty of the ongoing COVID-19 pandemic and commitment to the health, safety, and comfort of all attendees, PeDRA leadership has made decision to conduct the 2020 Annual Conference virtually. Join us October 22-23 from the comfort of your home or office for the first-ever virtual PeDRA Annual Conference. Conference organizers remain committed to hosting an event to learn, share, and advance research that improves the lives of children and families facing the burden of pediatric skin diseases. The virtual format will not stop them.

REGISTER

Vermont Stepping Out Hills Path

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

Ticket to Work - WISE

Understanding Ticket to Work: How to Help Your Clients and the People You Serve

WEBINAR: September 30, 2020; 3 p.m. Eastern Time

Do you or your organization serve people with disabilities who receive SSDI or SSI? 

Learn more about Social Security’s Ticket to Work Program during the next Work Incentive Seminar Event (WISE) webinar. 

REGISTER

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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