National Scleroderma Foundation

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eLetter #959 | March 4, 2022

	Join A Stepping Out to Cure Scleroderma Walk Near You Stepping Out to Cure Scleroderma walks give you a way to get involved and help advance our mission. By joining a walk, you help us take one step closer to finding a cure for scleroderma. Don't miss this fun and exciting opportunity to make a difference in the life of someone affected by this disease! Click below to find and register for a walk near you. FIND A WALK
	Want to Join a Special Group Within the Scleroderma Community? Become a Member of the National Scleroderma Foundation Today! For only $25 a year ($35 USD for those living outside of the USA), you can support our mission and gain special access to our quarterly magazine, the Voice, along with a discounted registration fee to our annual National Scleroderma Conference. Become a member yourself or give the gift of membership to a friend or family member by completing our online membership form or by giving us a call us toll-free at (800) 722-HOPE [4673]. MEMBERSHIP
Ronni Shulman Mallozzi & Cos Mallozzi	Life Changing “It’s just been remarkable to be involved in the Foundation over these years and see how far we’ve come.” When the National Scleroderma Foundation connected Ronni Shulman Mallozzi with the right doctors, her life changed for the better. She recalls the emotions she felt walking into her first chapter meeting in New York City. WATCH
	Call for Leadership Nominations Join the National Scleroderma Foundation Board of Directors in leading the Foundation into the future. Do you have thoughts and ideas on how to help the Foundation meet its mission? Are you passionate about serving the community of people affected by scleroderma? Are you a strategic thinker focused on outcomes? Consider serving on the National Scleroderma Foundation Board of Directors. This year, the Board is focused on recruiting leaders with specific expertise in research, philanthropy, awareness building, and grassroots events strategy. Candidates from the Midwest and West are strongly encouraged to apply to ensure a good balance in terms of geographic distribution of the board. In addition, the Board is interested in recruiting new members with diverse backgrounds and perspectives, as well as new voices. The position description for board members is available here. Pending approval, new board members will begin service July 1, 2022, and serve a three-year term to end June 30, 2025. Applications are due online by 5 p.m. Eastern on Friday, April 15, 2022. NOMINATIONS
	Scleroderma Advocates Train to Light the Country Teal and Secure Awareness Proclamations Over the past week, energized volunteer scleroderma advocates conducted three trainings to teach other motivated volunteers how to reach out to private and public buildings and landmarks in their communities and request that they be lit teal during scleroderma awareness month in June. They also gave instructions on how to reach out to state legislators and governors, and local mayors to request resolutions and proclamations for awareness month. If you are motived to light it up #TealforScleroderma and to secure proclamations and resolutions, please contact Demi Montgomery, dmontgomery@scleroderma.org, or reach out to your local chapter.
	Palliative Care in Scleroderma and Sarcoidosis ZOOM: March 8, 2022; 2 p.m. Eastern Please join the American Thoracic Society (ATS) on Tues., March 8 at 2 p.m. Eastern for a virtual roundtable discussion entitled “Palliative Care in Scleroderma and Sarcoidosis.” Hosted by the ATS and presented as part of the “Lung Disease Week at the ATS” initiative, a program designed to facilitate information exchange between patients and experts on matters relating to lung and airway disorders. This roundtable discussion was a collaborative effort between the ATS Public Advisory Roundtable (PAR), the National Scleroderma Foundation, and the Foundation for Sarcoidosis Research. The panel includes scleroderma expert Elizabeth Volkmann, MD, MS, of the UCLA Scleroderma Program and Sarcoidosis expert Jinny Tavee, MD, of National Jewish Health. REGISTER
	Making the Most of Your Medical Appointments GOTOWEBINAR: March 10, 1 p.m. Eastern NeedyMeds’ partner, the Lupus Foundation of America, will provide tips to make the most out of your next medical appointment. The more prepared you are, the more likely you will be to discuss the issues that are most important to you and leave with a plan in place. REGISTER
	Mogil's Mobcast: The Pediatric Scleroderma Journey In this episode, Ann Mogilevsky talks with Christina Loccke, whose daughter has juvenile scleroderma. Christina takes us on her daughter's journey through diagnosis, medical treatment, and lifestyle. We talk in detail about what juvenile scleroderma is, since it is very rare. Christina is paying it forward by helping other parents whose children have this disease. She is also on the board of directors for the National Scleroderma Foundation. LISTEN
	BIPOC Support Group ZOOM: March 13, 4 - 5:30 p.m. Eastern TOPIC: Creativity & Art Are Powerful Join Lucy Wong, veteran art speaker, and the BIPOC support group facilitators at their March 13 meeting. The topic will explore the power of creativity and art. Please register in advance. After registering, you will receive an email with meeting access details. REGISTER
	Advances in Scleroderma Research - Global Webinar ZOOM: April 1, 2022; 11 a.m. - 12:30 p.m. Eastern The goal of the Advances in Scleroderma Research - Global Webinar is to rapidly disseminate knowledge by promoting awareness of new advances, fostering new collaborations, creating new networks, encouraging early-stage investigators, and inspiring interested learners. Participation is free of charge and open to all interested scleroderma researchers, including trainees. Speakers & Topics: Ido Amit, PhD, and Chamutal Gur, PhD, Weizmann Institute of Science Victor J. Thannickal, MD, Tulane University Paul Hiebert, PhD, ETH Zürich REGISTER
	Anna Belle Carter Memorial Scholarship Anna Belle Carter was a wonderful 13-year-old living a full life with scleroderma when she passed away in July 2020 from COVID-19. The Anna Belle Carter Memorial Foundation was established by her family to financially assist deserving students who are affected by scleroderma in furthering their education goals at an accredited college, university, or technical school to attain an undergraduate degree, an initial graduate degree, or certification. The ABCMF awards scholarships on the basis of academic potential and demonstrated achievement, exemplary citizenship, personal character, and need. Read complete application criteria. Download an application. All applications are due by April 15, 2022, to be reviewed and awardees selected by May 4, 2022. READ
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