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Scleroderma Foundation
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eLetter #885 | October 2, 2020  

Scleroderma Virtual University Fall Series

Lesley Saketkoo 2018 Conference Doctor of the Year
Lesley Ann Saketkoo, M.D., M.P.H.

Learning to Love Our Friend—The Gut
WEBINAR, Scleroderma Virtual University
October 7, 3 - 4 p.m. Eastern
(2 Central, 1 Mountain, 12 Pacific)

With Lesley Ann Saketkoo, M.D., M.P.H., Tulane University School of Medicine

The Scleroderma Virtual University fall patient education series continues into October with another important presentation regarding scleroderma symptom management 

Love requires time, attention, tenderness, patience, gratitude, some sacrifice...and acceptance. This workshop will focus on scientifically based kindness strategies to befriend the gut by enhancing food tolerance and augmenting nutrition; while considering prevention and management strategies to reduce scleroderma related GI symptoms and complications. With the ultimate goal of improving freedom and quality of life.

REGISTER

Mary Crowe Care Dimensions

VIDEO: Taking the Mystery Out of Hospice and Palliative Care

Watch the video recording of "Taking the Mystery Out of Hospice and Palliative Care," originally presented September 30 by Mary Crowe, L.I.C.S.W., A.C.H.P.-S.W., C.D.S., of Care Dimensions. (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

 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

support group stock photo 

Virtual Support Groups

Just because you can't meet in person doesn't mean you can connect with others who share your scleroderma experience.  Find a support group that meets virtually by visiting the Scleroderma Foundation's website.  

SUPPORT

 Designated Scleroderma Research & Treatment Center SF Lo

Designated Scleroderma Research & Treatment Centers

Finding the right doctor is really important in managing your scleroderma journey. There are many great rheumatologists, but not all have significant experience treating individuals who have scleroderma. 

A "Designated Scleroderma Research and Treatment Center" demonstrates expertise in the care of individuals who have scleroderma, conducts scleroderma research, offers scleroderma education, and provides information about care and treatment to healthcare professionals and the public.  

CENTERS

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

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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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