National Scleroderma Foundation

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eLetter #956 | February 11, 2022

	Girls Only: SYNC Meet Up ZOOM: February 11, 2022; 7 p.m. Eastern Join SYNC for a special girls only, self-care Valentine's Day celebration on Friday, February 11 at 7 p.m. Eastern (4 p.m. Pacific). SYNC is Scleroderma Young Adults Needing Connection. REGISTER
	12th Annual Amy K. Parrish Scleroderma Education Conference ZOOM: February 12, 2022; 1 - 4 p.m. Eastern Attend the 12th annual Amy K. Parrish Scleroderma Education Conference on Saturday, February 12, 2022, at 1 p.m., via Zoom. Three scleroderma specialists from the Medical University of South Carolina will speak: Richard Silver, MD, Faye Hant, DO, MSCR, and DeAnna Baker-Frost, MD, PhD. To register for the conference, please send an email to scchapter@scleroderma.org and provide the name(s) of those attending. On Wednesday, February 9, you will receive a Zoom invitation link.
	Mission Mary Wheatley, CEO of the National Scleroderma Foundation, discusses the mission and its embodiment in our name and logo. No two scleroderma journeys are the same, but we can help you find your best path forward. WATCH
	Mogil's Mob - A Scleroderma Chat Ann Mogilevsky's podcast, Mogil's Mob, aims to have a central place for people affected by scleroderma 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. The next one airs on February 14. PODCAST
	Happy Valentine's Day! Every day, especially on Valentine’s Day, we ar ehumbled at the thousands of you who put your heart into advancing medical research, promoting disease awareness, and providing support and education to people with scleroderma, their families, and support networks. Thank you so much for all you do for our mission at the National Scleroderma Foundation. SCLERODERMA.ORG
	Caregiver Connection ZOOM: February 19, 2022; 10 a.m. 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.
	El Grupo Bilingüe de Apoyo El Grupo Bilingüe de Apoyo de la Fundación Nacional de Esclerodermia te invita a su reunión vía zoom “Esclerodermia. preguntas frecuentes responde el reumatólogo Dr. Rafael. Rivas-Chacón,” el próximo 19 de febrero del 2022 a las 9:00 a.m. (tiempo de Miami). Por favor envíe sus preguntas al correo electrónico miamiradgroup@gmail.com antes de la reunión. REGISTRARSE
	Nationwide Children's Hospital Rare Disease Day Event VIRTUAL: February 22, 2022; 4-7:30 p.m. Eastern Special program for children 4-5 p.m. 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 p.m. 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 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
	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
	Exercise is Medicine in Scleroderma: Vitality of Mind and Body VIDEO: Recorded July 2021 Watch "Exercise is Medicine in Scleroderma: Vitality of Mind and Body," presented by Lesley Ann Saketkoo, MD, MPH, recorded during the 2021 virtual National Scleroderma Conference. Dr. Saketkoo explains that nearly every aspect of systemic sclerosis can be beneficially impacted by exercise: inflammation, circulation, body warmth, GI, skin, musculoskeletal, and lung health. The session empowers people living with scleroderma to feel confident in constructing an exercise regimen for your needs related to scleroderma. WATCH
	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). The study involves attending and participating in a 1½ hour virtual meeting once a week for 6 weeks, completing questionnaires at the start and end of study, and an interview at the conclusion. Compensation offered. CONTACT: Janet Poole, PhD, OTR/L, jpoole@salud.unm.edu, (505) 272-8276, or Kristine Carandang, OTR/L, carandangkm@gmail.com, (626) 722-8761.
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