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Scleroderma Foundation
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eLetter #883 | September 18, 2020  

Scleroderma Virtual University Fall Series

Sundar Balasubramanian, Ph.D., C.-I.A.Y.T.
Sundar Balasubramanian,
Ph.D., C.-I.A.Y.T.

Gentle Yoga & Yogic Breathing for Scleroderma Symptom Management
Virtual University Webinar: Sept. 23, 3 - 4 p.m. Eastern
(2 Central, 1 Mountain, 12 Pacific)

With Sundar Balasubramanian, Ph.D., C.-I.A.Y.T., Medical University of South Carolina

This 1 hour workshop/live demonstration will provide 30 minutes of gentle movement exercises that are practiced by sitting on a chair, followed by 30 minutes of breathing exercises. 

These exercises are designed for relieving stress and improve salivation. 

No prior yoga experience necessary, and everyone can join. 

The practice is comfortable before a meal or at least two hours after a meal. Drink adequate fluid.

REGISTER

YouTube 2020 Virtual University September 16 Teodorescu

Video: The Importance of Sleep When Living With Chronic Lung Disease

Watch the video recording of "The Importance of Sleep When Living With Chronic Lung Disease," presented September 16 by Mihaela Teodorescu, M.D., M.S., University of Wisconsin School of Medicine and Public Health, 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

 Katie Kinson Know the Face Awareness

Know the Face of Scleroderma

During Awareness Month in June, we highlighted a number of individuals on sclerodermaaware.org who volunteered to tell their scleroderma story to help increase awareness. Each month, we will share one of their stories here to keep the momentum going. 

When Katie Kinson was diagnosed with scleroderma at the age of 14 in 2003, one of the many worries she experienced about her future was whether she could find love and get married.  As a huge fan of the "Say Yes to the Dress" television show, Katie pictured herself as one of the lucky women on the show, selecting their dream wedding gowns. Not even scleroderma could stop Katie when opportunity knocked...

READ

SYNC Meet Up Young Adults Tri-State

SYNC Meet Up

Scleroderma Young Adults Needing Connection
Friday, September 25, 2020, 7 p.m. Eastern Time

Scleroderma young adults ages 18-42 are invited to join the SYNC Meet Up on Friday, September 25, 2020 at 7 p.m. Eastern. 

DETAILS: sdtristate@sclerodermatristate.org or agietzen@scleroderma.org

PFF Awareness 2020 30 facts 30 days three

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.

Anywhere from 3 to 20 percent of people with pulmonary fibrosis (PF) have another family member with PF. But this doesn’t mean that up to 20 percent of your family members will develop PF. In most cases, the chance that one of your family members will develop PF is very low.

30 FACTS

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

 myPHteam Telemedicine

Telemedicine and PAH: How to Make Online Health Care Work for You

Some people have concerns about using telemedicine for the first time. Learn how to be prepared to make the most of that time when you have PAH on myPHteam.

myPHteam

 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

boehringer more than scleroderma Caregivers Guide

Caring for Someone with Scleroderma

Scleroderma Caregivers Guide 

In collaboration with the Scleroderma Foundation, Scleroderma Canada, Scleroderma Research Foundation, and FESCA (Federation of European Scleroderma Associations), Boehringer Ingelheim has produced a guidebook for caregivers that emphasizes the importance of self-care in addition to caring for a person in your life who has scleroderma.

DOWNLOAD

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

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

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):

  • 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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