National Scleroderma Foundation

Scleroderma Foundation

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eLetter #947 | December 10, 2021

	New Colorado Pediatric Scleroderma Center Children's Hospital Colorado, Section of Pediatric Rheumatology has been designated as a Scleroderma Research & Treatment Center by the Foundation's Medical & Scientific Advisory Board. The center accepts referrals for localized scleroderma/morphea, systemic sclerosis, stiff skin syndrome, and other sclerosing diseases. New cases accepted up to 18 years of age. READ
	Strategic Plan Update ZOOM: January 13, 2022; 2 PM Eastern Join CEO Mary J. Wheatley to hear an update on the Foundation's strategic plan. Learn about progress in our exciting work to strengthen our organization and to build capacity for growth in support of individuals affected by scleroderma, to expand our education programs, and to build greater resources for research funding. REGISTER
	Dates & Deadlines for 2022 Health Insurance You can enroll in or change 2022 Marketplace health insurance right now on HealthCare.gov. December 15, 2021 is the last day to enroll in or change plans for 2022 coverage that starts January 1, 2022. After that, January 15, 2022 is the last day to enroll in or change plans for 2022 coverage (for coverage starting February 1, 2022). After this date, you can enroll or change plans only if you qualify for a Special Enrollment Period. HEALTHCARE.GOV
	Scleroderma Young Adults Needing Connection (SYNC) VIRTUAL: December 17, 2021; 7 PM Eastern Young adults between the ages of 18 and 42 who seek connection with others their age are invited to attend the SYNC Meet Up on December 17 for "All things holiday!" Wear your best ugly sweater and let's celebrate! REGISTER
	The 20%: A Virtual Support Group for Males Living with Scleroderma VIRTUAL: December 22, 2021; 7-8 PM Eastern TOPIC: What is All the Fuss About? To support the men with scleroderma in our community, the Michigan Chapter hosts a virtual support group just for men. Join the December 22 virtual group from 7 to 8 p.m. Eastern. The topic, What is all the fuss about?, offers reflections, tips, and tricks. There is time for questions at the end. Register now and find support and hope in the community. REGISTER
	COVID-19 Update VIDEO: Recorded July 2021 Watch this presentation with COVID-19 updates recorded during the 2021 virtual National Scleroderma Conference with Jessica Gordon, MD, MSc, and Robert Spiera, MD, of the Hospital for Special Surgery in New York City. Drs. Gordon and Spiera discuss vaccinations and other important health updates. WATCH
	Common Complications in Juvenile Localized Scleroderma, General Health Guidelines VIDEO: Recorded October 2021 Watch this presentation from the 2021 virtual Kids Get Scleroderma, Too! Conference with Suzanne Li, MD, of the Joseph M. Sanzari Children's Hospital, who discusses common complications in juvenile localized scleroderma. WATCH
	ILD Day Survey We need your insights! Please take our short online survey to help us learn more about ILD awareness and perceptions. Your responses will be anonymous and it should take less than five minutes. The information will help create educational materials and programs for the future. This survey was developed in collaboration with Boehringer Ingelheim Pharmaceuticals, Inc. SURVEY
	Research Study to Evaluate an Online Fatigue Intervention Program Researchers from the University of New Mexico seek participants for a study to evaluate an online fatigue intervention program for adults. To participate, be a U.S. resident, 18 or older, have systemic sclerosis (SSc, systemic scleroderma). Study involves attending and participating in a 1½ hour virtual meeting once a week for 6 weeks, completing questionnaires at the start and end of study, and an interview at the conclusion. Compensation is offered. CONTACT: Janet Poole, Ph.D., O.T.R./L., jpoole@salud.unm.edu, (505) 272-8276, or Kristine Carandang, O.T.R./L., carandangkm@gmail.com, (626) 722-8761.
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