National Scleroderma Foundation

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eLetter #958 | February 25, 2022

	Do You Want to Make a Difference on Rare Disease Day? Scleroderma is a rare disease and is widely unknown. But we’re here to change that. This Monday, on Rare Disease Day, you can make a gift to the National Scleroderma Foundation and aid us in being a relentless force in finding a cure for scleroderma. Click below to help us continue raising awareness and helping everyone with scleroderma find their best path. scleroderma.org/donate
	Stakeholder Update ZOOM: March 17, 2022; 4 p.m. Eastern Join CEO Mary J. Wheatley for a quarterly update on activities of the National Scleroderma Foundation. REGISTER
Andrew Botieri	Ups and Down After being misdiagnosed for several months, Andrew Botieri was diagnosed with systemic scleroderma in 2000. Although it has been a journey full of ups and downs, he is thankful the National Scleroderma Foundation has allowed him to connect with others he calls family. WATCH
	How to Dance in the Rain VIRTUAL: February 26, 2022; 1 p.m. Eastern How to Dance in the Rain is a virtual conference for individuals with scleroderma, their loved ones, and caregivers to find hope and connect with one another. The event starts at 1 p.m. Eastern with opening remarks from Michigan Chapter Executive Director Laura Dyas. The program includes educational seminars from medical professionals, Q&A segments, exercises, and more. Sign into the event on February 26 using the link below. SIGN IN
	Sunday Sit-down FACEBOOK LIVE: February 27, 1 p.m. Eastern (12 p.m. CT, 11 a.m. MT, 10 a.m. PT) Join the Ohio Chapter for Sunday Sit-downs 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
	Mogil's Mobcast In this episode, Ann Mogilevsky talks with Dr. Elizabeth Volkmann, a rheumatologist who specializes in GI tract and the gut microbiome in scleroderma. The conversation starts from the beginning of the digestive tract and works its way down! The discussion includes causation, medications, and nutrition, and ways to handle the frustrations that come with digestive tracts not working correctly. LISTEN
	Share Your Experiences of Raynaud and Digital Ulcers Individuals who have scleroderma and experience Raynaud Phenomenon and digital ulcers are invited to participate in a study led by the Scleroderma Vascular Disease Working Group of OMERACT, an international initiative of health professionals established in 1992 to improve outcome measurement in rheumatology. All answers are confidential. The survey takes 20 minutes to complete. You must be 18 or older, have scleroderma, and experience Raynaud Phenomenon with or without digital ulcers. There are two rounds of the survey. SURVEY ONE SURVEY TWO (also accessible at the completion of the Raynaud’s phenomenon survey)
	Rare Disease Day at NIH VIRTUAL: February 28, 2022; 10 a.m. - 6 p.m. Eastern On February 28, 2022, NIH (National Institutes of Health) will celebrate Rare Disease Day with a virtual conference to raise awareness about rare diseases, the people they affect, and NIH collaborations that address scientific challenges and advance research for new treatments. REGISTER
	Sharing Experiences in Rare Diseases Together VIRTUAL: March 4, 2022; 9 a.m. - 4:30 p.m. Eastern The FDA will host a virtual public meeting on March 4, 2022, 9:00 am to 4:30 pm EST, to join the global observance of Rare Disease Day. The theme is “Sharing Experiences in Rare Diseases Together.” Various stakeholders will share their perspectives on and experiences in rare disease product development. Visit the public meeting page to register for the event. If you are a person with a rare disease, caregiver or advocate who is interested in speaking on a panel about your engagement with the FDA, please indicate so in your registration. You are also encouraged to add a comment to the public docket FDA-2022-N-0116. Please visit the Office of Orphan Product Development’s Rare Disease Day webpage to learn more about other activities relevant to rare diseases and listen to stories from the rare disease community and FDA staff working on rare diseases. REGISTER
	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
	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
	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
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