National Scleroderma Foundation

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eLetter #954 | January 28, 2022

	Take Action to Protect Scleroderma Research Senators are currently working on the final FY 2022 Department of Defense appropriations bill and deciding on final funding levels. Contact your Senators TODAY and ask them to “support funding for the Scleroderma Peer-Reviewed Research Program at $5 million in the final DoD FY 2022 bill. Click the link below to send an email to both of your Senators. We have simplified the steps by including specific information about the funding program and the disease to include in your email. Still, we left space for you to write one or two brief paragraphs why scleroderma research is important to you. TAKE ACTION
	My Journey - Emilie Grace Julian “Along the journey, it’s been really challenging...it’s been really difficult at times, but it’s something that with medication people are living longer and they’re living healthier lives,” says Fernella Julian, mother of Emilie Grace Julian. Hear personal stories from those living with this rare disease. VIDEO
	Mogil's Mob - A Scleroderma Chat Ann Mogilevsky's podcast 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. January 31 is the next post, which features National Scleroderma Foundation CEO, Mary Wheatley. PODCAST
	Sunday Sitdown FACEBOOK LIVE: January 30, 1 p.m. Eastern Time (12 p.m. CT, 11 a.m. MT, 10 a.m. PT) Join the Ohio Chapter for Sunday Sitdowns on the last Sunday of every month at 1 p.m. Eastern Time via Facebook Live. This is a time to connect with others who live with the challenges caused by scleroderma. Please note, given the open, unsecure nature of Facebook, do not share private, personal information during this conversation. WATCH
	Parents of Children with Scleroderma TOPIC: Supporting Self-Management & Improving Health Outcomes ZOOM: February 2, 2022; 7:30 - 9 PM Eastern Self-management is when an individual takes an active role in their treatment and care. Curious to learn more or help your child get started with this practice? Join us for an online support group on February 2 from 7:30-9:00 p.m. EST to learn self-management tips and techniques. 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
	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.
	Nationwide Children's Hospital Rare Disease Day Event VIRTUAL: February 22, 2022; 4-7:30 PM Eastern Special program for children 4-5 PM Join the 4th Annual virtual Rare Disease Day at Nationwide Children's Hospital to raise awareness of rare diseases and support the children and families they affect. The event is free and open to the public, including patients, their families and caregivers, healthcare providers, and research professionals. The program will be held virtually and livestreamed from The Discovery Auditorium at the Nationwide Children’s Hospital Research Institute. A confirmation email/text with virtual connection directions will be sent to everyone who registers for the program. REGISTER
	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
	Toward a Better Understanding and More Effective Treatments for Scleroderma VIDEO: Recorded July 2021 Watch "Toward a Better Understanding and More Effective Treatments for Scleroderma...A Journey from the Laboratory to the Bedside," presented by Michael L. Whitfield, PhD, Dartmouth Geisel School of Medicine, and recorded during the 2021 virtual National Scleroderma Conference. Dr. Whitfield discusses what a genome is and how it affects you and scleroderma treatments. WATCH
	AFib While atrial fibrillation (AFib) may affect about 1% to 2% of the general population, it affects up to one-third of people with PH. Check out this myPHteam resource to learn more about AFib and pulmonary hypertension. myPHteam
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