National Scleroderma Foundation

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eLetter #955 | February 4, 2022

	12th Annual Amy K. Parrish Scleroderma Education Conference ZOOM: February 12, 2022; 1 - 4 PM Eastern Attend the 12th annual Amy K. Parrish Scleroderma Education Conference on Saturday, February 12, 2022 at 1 p.m., via Zoom. Three scleroderma specialists from the Medical University of South Carolina will speak: Richard Silver, MD, Faye Hant, DO, MSCR, and DeAnna Baker-Frost, MD, PhD. To register for the conference, please send an email to scchapter@scleroderma.org and provide the name(s) of those attending. On Wednesday, February 9, you will receive a Zoom invitation link.
	Changing Roles After Diagnosis “As a husband, your role changes to suddenly becoming a caregiver. There’s no playbook for that.” Cos Mallozzi’s wife, Ronni, was diagnosed with scleroderma around thirty years ago. He is now chair of the National Scleroderma Foundation’s board of directors. WATCH
	Mark Your Calendars for Rare Disease Day 2022 Scleroderma is a rare disease that affects more than 300,000 Americans. On Rare Disease Day this year, Monday, February 28, 2022, the National Scleroderma Foundation will be spreading awareness with media you can share with friends and family, so be sure to be on the lookout for our social posts! SCLERODERMA.ORG
	Mogil's Mob - A Scleroderma Chat Listen to Ann Mogilevsky's January 31 podcast featuring Mary Wheatley, CEO of the National Scleroderma Foundation. Ann's podcast, Mogil's Mob, aims to have a central place for people affected by scleroderma and their families and friends to be informed by specialists in scleroderma or autoimmune topics. Ann covers a wide range of topics like nutrition, medications, vitamins, and lifestyles. She also showcases stories from others affected by scleroderma and how they have dealt with the disease. For additional information you can visit her website, Mogilsmobcast.com, or follow her on Instagram, mogilsmob, and Facebook, mogilsmob. Mogil's Mob podcasts post every other Monday. The next one is February 14. PODCAST
	Becoming an Empowered Patient VIRTUAL: February 16, 1 PM Eastern Join Andrea Baer, Executive Director of Mended Hearts, as she walks you through how to become an empowered patient. Learn how advocating for yourself and being an active part of your own healthcare team can improve your health. This is a popular presentation returning due to high demand so don't wait to sign up. Space is limited. Presented by NeedyMeds REGISTER
	Girls Only: SYNC Meet Up ZOOM: February 11, 2022; 7 PM Eastern Join SYNC for a special girls only, self-care Valentine's Day celebration taking place Friday, February 11 at 7 p.m. Eastern (4 p.m. Pacific). SYNC is Scleroderma Young Adults Needing Connection. REGISTER
	Caregiver Connection ZOOM: February 19, 2022; 10 AM Mountain All caregivers welcome. Sara Clement, Southern Colorado Support Group Leader, will be hosting. To attend, request the Zoom link by sending an email to Sara, at sarc56@gmail.com.
	Share Your Experiences of Raynaud and Digital Ulcers Individuals who have scleroderma and experience Raynaud Phenomenon and digital ulcers are invited to participate in a study led by the Scleroderma Vascular Disease Working Group of OMERACT, an international initiative of health professionals established in 1992 to improve outcome measurement in rheumatology. All answers are confidential. The survey takes 20 minutes to complete. You must be 18 or older, have scleroderma, and experience Raynaud Phenomenon with or without digital ulcers. There are two rounds of the survey. The survey for the first round will be available on January 17 at the link below. Another survey will be available in mid-February. SURVEY
	How to Dance in the Rain VIRTUAL: February 26, 2022; 1 PM Eastern Life isn't about waiting for the storm to pass, it's about learning to dance in the rain. Offered by the Michigan chapter, the conference, How to Dance in the Rain, is a time for individuals with scleroderma, their loved ones, and caregivers to find hope and to connect with one another. The event starts with opening remarks from Michigan Chapter Executive Director Laura Dyas and includes educational seminars from medical professionals, Q&A segments, exercises, and more. Click the link below on February 26 to attend. ATTEND
	How is Research Done in Scleroderma? VIDEO: Recorded July 2021 Watch "How is Research Done in Scleroderma," presented by Dinesh Khanna, MD, and John Varga, MD, both of University of Michigan, recorded during the 2021 virtual National Scleroderma Conference. Drs. Khanna and Varga answer questions about finding clinical trials, how research is funded, what researchers are working on now, and more. WATCH
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