National Scleroderma Foundation

Scleroderma Foundation

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eLetter #939 | October 15, 2021

	Virtual Conference for Parents & Guardians of Youth with Scleroderma ZOOM: October 23, 2021; 11 a.m. - 3 p.m. Eastern The 2021 Kids Get Scleroderma, Too! conference (KGS2) is geared toward educating parents and guardians with up-to-date information to help them best navigate their child’s disease. To relieve the pressure of yet another virtual meeting for children, youth are not the primary participants this year. This conference is free. The one-day, virtual event takes place Saturday, October 23 from 11 a.m. to 3 p.m. Eastern via Zoom. REGISTER TODAY
	Lung Transplantation for Scleroderma VIDEO: Recorded July 2021 Watch this presentation by Maria M. Crespo, MD, Hospital of the University of Pennsylvania, recorded during the 2021 virtual National Scleroderma Conference. Dr. Crespo presents an overview of lung transplantation and how you and your family can be better prepared to navigate the conversation related to lung transplantation for individuals who have scleroderma. WATCH
	Calling All Artists Are you an artist? If so, we want to feature your artwork in a new initiative the Foundation is implementing to grow engagement with our supporters. The theme of this year's project is "My Journey." Artwork should reflect this theme. If you would like your artwork to be considered, please send an email to Lauren Galvan at LGalvan@scleroderma.org, including 1) your name and chapter affiliation, 2) images or videos of your artwork (we will consider all forms of artwork), 3) a photo of you, and 4) information about your journey with scleroderma or how you've been affected by the disease. By making a submission, you are permitting your photos and information to be used in future Scleroderma Foundation communications. We’ll let you know if you are selected. We are excited to see your creativity!
	Caregiver Support & Relationships Roundtable YOUTUBE: Recorded October 7, 2021 The Caregiver Support & Relationships Roundtable offered by the Tri-State Chapter is an exchange of information, ideas, and perspectives about caregiver support and relationships. Guest Speaker Cathy Little spoke about her time as a caregiver, compassion fatigue, focusing on yourself, and much more. WATCH
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	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 an hour and a half virtual meeting once a week for six weeks, completing questionnaires at the start and end of the study, followed by 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.
	Caregiver Burnout: Symptoms and How to Avoid Them Caring for a loved one or even for others is a very noble deed. While it can be very rewarding, it could also involve a lot of stressors. If the stress of caregivers goes unnoticed, it eventually takes a toll not only on their physical health but their mental wellness, too. Learning to recognize the signs and symptoms of burnout is very important to prevent things from going out of control and to begin improving the situation between the caregiver and the person being cared for. Follow the link below for a guide prepared by Health and Wellness Awareness Council with information on symptoms of caregiver burnout and practical tips to avoid them. Also included are relevant statistics on caregiver burnout and a caregiver self-check if he/she is experiencing a burnout. READ
	Becoming an Empowered Patient WEBINAR: October 20, 2021; 2:30 p.m. Eastern Join Andrea Baer, Executive Director of Mended Hearts (a NeedyMeds partner), as she walks us 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. Register today as space is limited. REGISTER
	Debunking the Three Biggest Myths About Disability Benefits & Work WEBINAR: October 27, 2021; 3 - 4:30 p.m. Eastern If you receive Social Security disability benefits (SSDI or SSI) and you want to work, mark your calendars for October 27 at 3 p.m. Eastern to attend the October Work Incentive Seminar Event (WISE) webinar. Learn the truth about the three biggest myths surrounding disability benefits and work. Get info that will help you make a decision that work may be right for you, to look for a job and successfully transition to work. REGISTER
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