National Scleroderma Foundation

Scleroderma Foundation

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eLetter #936 | September 24, 2021

	Kids Get Scleroderma, Too! Virtual Conference for Parents & Guardians ZOOM: October 23, 2021; 11 a.m. - 3 p.m. Eastern Time 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 Time via Zoom. REGISTER
	A Comprehensive Framework for Navigating Patient Care in Systemic Sclerosis Best Practice & Research Clinical Rheumatology, Volume 35, Issue 3; September 2021 A potentially paradigm-shifting article regarding diagnosis and preventive strategies for systemic sclerosis has been published in "Advances in Systemic Sclerosis," a special edition of the open source medical journal, "Best Practice & Research Clinical Rheumatology." Lead author Lesley Ann Saketkoo, MD, MPH, is joined by a host of leading scleroderma rheumatologists, many of whom are members of the Scleroderma Foundation's Medical & Scientific Advisory Board. Dr. Saketkoo, et al., state "As scleroderma specialists, we offer a practical framework with tools to facilitate an optimal, comprehensive and sustainable approach to SSc care. Improved health outcomes in SSc relies upon recognition, management and, to the extent possible, prevention of SSc and treatment-related complications." READ
	GI Involvement and Nutrition in Systemic Sclerosis: Myths and Facts VIDEO: Recorded July 2021 Watch Elizabeth Volkmann, MD, MS, of UCLA Health present crucial information on gastrointestinal involvement and nutrition in systemic sclerosis. This session was recorded during the 2021 virtual National Scleroderma Conference. WATCH
	Building the Bridge Summit: Closing the Literacy Gap VIRTUAL: Sat., Oct. 9, 2021; 9 a.m. - 5 p.m. Eastern Time Presented by Black Health Matters Join Black Health Matters for a glorious day of renewal as leading clinicians and advocates convene to inspire you to get healthy and stay healthy. Enjoy information on conditions that impact African Americans: Asthma, Breast Cancer, Clinical Trials, COVID Vax & Variants, Dental Health, Hair Loss, Heart Disease, Hypertension, Liver Cancer, Multiple Sclerosis, Skin Discoloration, Stroke, and much more. Building the Bridge is the newest offering in the Black Health Matters summit series. Summits are designed to be interactive forums where experts share knowledge and people ask questions openly. REGISTER
	Rocky Mountain Scleroderma Education Summit ZOOM: Sat., Sept. 25; 10 a.m. to 1:45 p.m. Mountain Time Sign up for one of three virtual educational sessions hosted by the Rocky Mountain Chapter on Saturday, September 25. 10:00 a.m. - 11:15 a.m. MDT: Get Moving Again: Accessible Yoga, Breathing, and Improved Gut Health. Rachel Lando and Dr. Laura Pace . Register 11:30 a.m. - 12:15 p.m. MDT: Grin and Bear It - Strategies for Living With a Small Mouth. Dr. Sandy Vojik and Dr. David Leader. Register 12:30 p.m. - 1:45 p.m. MDT: Things Your Doctor Never Told You: Sex, Drugs, and Other Taboo Topics. Comedian Karen Vasquez, Dr. Kelli Gross, Dr. Erica Johnson, Dr. Jessica Farrell, and Dr. JoAnna Harper. Register
	Sunday Sitdown FACEBOOK LIVE: September 26, 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, unsecured nature of Facebook, do not share private, personal information during this conversation. WATCH
	Rheumatic Disease Awareness Month September is Rheumatic Disease Awareness Month, created to raise awareness of over 100 rheumatic diseases that affect millions of people each day. The Rheumatology Research Foundation will share educational information and spotlight RheumChampions throughout the month on Facebook, Twitter, and Instagram. WEBINAR: September 30, 7:30 p.m. Eastern Time Receiving an initial diagnosis can be an intense experience. Join the Rheumatology Research Foundation on September 30 at 7:30 p.m. Eastern Time as Emily V. Gordon and Stuart Kassan, MD, MACR, lead a conversation around the experience of receiving a first diagnosis, methods of coping, and ways to advocate for yourself. For more information visit rheumresearch.org/just-diagnosed. REGISTER
	Connect on Social Media Like us, love us, follow us, comment, share, retweet, and post on the Scleroderma Foundation's social media outlets. Facebook Twitter Instagram LinkedIn We also have a LinkedIn group for networking. If you join, remember to adjust the settings to "Turn on All Notifications," so you know when a member of the group posts.
	Pulmonary Fibrosis Awareness Month Each September, join with those who have been impacted by pulmonary fibrosis worldwide to unite for Pulmonary Fibrosis Awareness Month. This initiative relies heavily on social media participation to spread the word about pulmonary fibrosis all over the world. One of the first steps you can take is to follow and interact with the Pulmonary Fibrosis Foundation on social media, using their handle, @pfforg, and get social with hashtags #PFMonth and #BlueUp4PF. Facebook \| Twitter \| Instagram \| YouTube
	Proud Partner with World Lung Day The Scleroderma Foundation is proud to be a partner in World Lung Day (WLD), September 25, a day for lung health advocacy and action. WLD is an opportunity for us all to unite and promote better lung health globally. The theme this year is "Care for Your Lungs:" say no to tobacco, protect them through vaccination, breathe clean air, and take regular physical exercise. LEARN MORE
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