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Scleroderma Foundation
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eLetter #944 | November 19, 2021  
Happy Thanksgiving 2021

Happy Thanksgiving!

Wishing you and yours a Happy Thanksgiving! 

At 3 PM Eastern on November 24, the Scleroderma Foundation National Office will close in observance of the holiday. We will resume regular business hours on Monday, November 29. 

Calls to (800) 722-4673 and emails to SFinfo@scleroderma.org during this time will be answered Monday the 29th.

Find information and resources at scleroderma.org.

 Advocacy Demi Senator Portman Capitol Hill Day
Take Action Square

Take Action by November 24

Ask your Senators to protect scleroderma research funding

Currently, there is a $5 million Scleroderma Peer-Reviewed Medical Research Program at the Department of Defense for continued research into scleroderma. There is a strong connection between environmental exposures and the onset of autoimmune diseases, which leaves military personnel at risk for developing conditions like scleroderma. Further, scleroderma impacts military personnel because the scarring associated with the disease process has broad applications to combat injuries.

Senators are currently working on the final FY 2022 Dept. of Defense appropriations bill and deciding what final funding levels will be. At this critical juncture, you can make a difference if you act by November 24. Please CLICK HERE to send emails to the Washington, DC offices of your Senators to ask that they “support funding for the Scleroderma Peer-Reviewed Research Program at $5 million in the final DoD FY 2022 bill.”

TAKE ACTION

HSS Logo for Walks

HSS Education Forum

VIDEO: November 20

The Tri-State Chapter and the Hospital for Special Surgery (HSS) recorded educational videos featuring Kimberly Showalter, MD, assistant attending rheumatologist at HSS, and Kerri Aronson, MD pulmonologist at Cornell University. The presentations will be published on the chapter's video website:

SclerodermaVideo.com

YouTube 2021 Conference KGS2 Pedi SSc Moore

Overview of Juvenile Systemic Sclerosis

VIDEO: recorded October 2021

Watch this presentation on juvenile systemic sclerosis by Katharine Moore, MD, assistant professor of pediatric rheumatology, and clinical research director at the University of Colorado School of Medicine. The webinar was recorded as part of the Kids Get Scleroderma, Too! virtual conference in October.

WATCH

Amazon Smile November 2021

Holiday Shopping Helps the Scleroderma Foundation

Many stores on AmazonSmile offer significant deals for online shoppers on Black Friday (November 26) and Cyber Monday (November 29). Whether you shop on these days or any other day of the year, AmazonSmile will donate a portion of your purchase cost to the Scleroderma Foundation. Go to the link below and click "start shopping" to get started.

AmazonSmile

Whenever you'd like to shop, be sure to shop from smile.amazon.com so Amazon knows you'd like to give back through your purchases. If you have any questions or want to learn more, email LGalvan@scleroderma.org.

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 YouTube 2021 Conference Enable Move Lando

Overview of Medications Used for Scleroderma

VIDEO: Recorded July 2021

Watch this presentation from the 2021 virtual National Scleroderma Conference with Rachel Lando, RYT 200, E‑RYT 200, and Dana Levy, IAYT‑Certified Yoga Therapist, as they guide you through gentle, accessible movement practice intended for those living with scleroderma and their greatest supporters. No experience or flexibility required.

WATCH

Family Caregiver 2021 Lung Disease
Family Caregiver 2021 Autoimmune

#CaregiverAnd: Celebrate the Passions That Enrich Your Life

Being a family caregiver is incredibly important, but it is critical not to lose sight of who you are. Your sense of self makes your life complete. This is an essential component of self-care that can ultimately prevent caregiver burnout and depression. #CaregiverAnd shifts that focus by highlighting the other roles, activities, and passions that make up your life. Learn more at the Family Caregiver Action Network.

#CAREGIVERAND

PHA Awareness Yoga Videos

Try Yoga and Other Exercises for PH

One of the best things you can do to relieve stress is to maintain your health. To help you exercise safely at home, the Pulmonary Hypertension Association developed five exercise videos to help people with PH build strength, maintain flexibility, and improve stamina. Each video comes with a downloadable PDF with questions for your doctor before you begin to exercise. To learn more about yoga for individuals with PH, download the PDF and watch the video. Additional videos may be viewed in the exercise section of PHA Classroom.

PHA CALENDAR

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Research

Advances in Scleroderma Research - Global Webinar

ZOOM: December 10, 2021; 11 AM - 12:30 PM Eastern USA

The Advances in Scleroderma Research - Global Webinar is open to all interested scleroderma researchers, including trainees. The purpose is to provide the most exciting and recent research advances to the global scleroderma research community in real time. Participation is free of charge.

Speakers & Topics: Bob Lafyatis, University of Pittsburgh Medical Center, Stuart Cook, Duke-National University of Singapore Medical School, Marlene Rabinovitch, Stanford University School of Medicine.

REGISTER

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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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