National Scleroderma Foundation

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eLetter #990 | October 7, 2022

	Office Closure for Indigenous Peoples Day In observance of Indigenous Peoples Day, our offices will be closed Monday, October 10. Staff will respond to calls and messages once the office reopens on October 11.
	Doing your holiday shopping early at Amazon's Early Access Sale? Now is a great time to sign up and support the Foundation on AmazonSmile. If you're planning on taking advantage of the discounts October 11-12, choose the National Scleroderma Foundation as your AmazonSmile charity at https://smile.amazon.com/ch/52-1375827 and make your purchases from smile.amazon.com so you can support the scleroderma community while you shop!
	Kids Meet Up Paint Party for Youth 6 to 17 years Sunday, October 23, 2022, 1:00 - 2:30 p.m. Eastern Time FREE and open to international participants Youth who have scleroderma, ages 6 to 17, and their siblings, are invited to join a very special virtual paint party! Register by the October 9 deadline to receive a paint kit with all necessary supplies mailed to your home. Maximum limit of two paint kits per household. SIGN UP
	Kids Get Scleroderma, Too! Virtual Conference VIRTUAL: October 22, 2022 Sign up now for the 2022 Kids Get Scleroderma, Too! Conference (KGS2). This virtual education conference is geared toward parents, guardians, and juveniles affected by scleroderma. Stay tuned for more information on conference programming! SIGN UP
	Newly Diagnosed Virtual Support Group ZOOM: October 12, 2022; 7 p.m. Eastern Individuals newly diagnosed as having scleroderma face an overwhelming number of questions about how it will affect their lives. Participation in a support group is one way to obtain information and receive support from others. This group, led by Ron Sasso, will help navigate these questions and support newly diagnosed individuals. If you are interested in joining the group, email newlydiagnosedsg@scleroderma.org.
	Caregivers Connection Support Group ZOOM: October 15, 2022; 10 a.m. Mountain Sara Clement, Southern Colorado Support Group Leader, will be hosting the Caregivers Connection Support Group Meeting on September 17. All caregivers are welcome to join. To attend, request the Zoom link by sending an email to Sara, at sarc56@gmail.com.
	Delaware Valley Education Event ZOOM: November 7, 2022; 7 p.m. Eastern The Delaware Valley Chapter and the Central PA Support Group are pleased to present a presentation by Dr. Fredrick Wigley, Director of the Johns Hopkins Scleroderma Center on November 2 at 7 p.m. Eastern. Dr. Wigley founded the Johns Hopkins Scleroderma Center with Robert A. Wise, M.D., of the Johns Hopkins Division of Pulmonary Medicine. Dr. Wigley has been honored with two American College of Rheumatology awards over the past couple years. He received the ACR Distinguished Clinician Scholar Award in 2009 and the AC Masters Award in 2011. The presentation is free. To attend the virtual Zoom event please contact JoAnne LaPergola, Delaware Valley Executive Director at 609-707-8651 or jlapergola@scleroderma.org or email Dan Caruso at sclerocentralpa@yahoo.com.
	Please help us track our progress toward our FY 2023 goals! Please take a quick pulse survey at the link. It’s just ten questions and only takes a couple of minutes to complete. Your feedback will help us shape the future of the Foundation. We appreciate your feedback!
	Heartland Chapter 10th Annual Sclero-What? Education Day ZOOM: October 15, 2022; 9 a.m. Eastern Are you interested in learning about treating and managing scleroderma? The Heartland Chapter will host their 10th Annual Sclero-What? Education Day on October 15, 2022, which will cover topics such as "New treatments for patients with SSc," "Gentle yoga and yogic breathing for symptom management in scleroderma," and "A Naturopathic Approach." There will also be over $800 in giveaways between speakers. SIGN UP
	National Scleroderma Foundation Minnesota Chapter Fall Mind Body Conference ZOOM: October 15, 2022; 9 a.m. Eastern The mind body connection can play an important role in autoimmune health. If you are interested in learning more about the mind body connection, sign up for the Mind Body Virtual Conference on October 15. The conference will cover topics such as "The Happiness Practice," "Research and Reasons for Mindfulness," and "Mind-Gut Connection." To learn more and sign up, visit the link! SIGN UP
	Study Tests Immunotherapy in People with Cancer and Autoimmune Diseases If you are an individual living with scleroderma and cancer, you might be eligible to take part in a new study focused on immunotherapy that is sponsored by the National Cancer Institute. This National Cancer Institute clinical trial is testing an immunotherapy drug (an anti-PD1 inhibitor, called nivolumab or Opdivo) in patients who have both cancer and an autoimmune disease, such as scleroderma. The trial’s scientific evidence could help develop new treatments for patients with scleroderma and help doctors better manage and prevent side effects from promising new treatments that are given to patients with autoimmune conditions who are otherwise good candidates for immune-based treatments for their cancer. The trials will take place in centers across the country, which can be seen in the link below. For participants at the trial locations in major cancer centers throughout the United States and at Princess Margaret in Toronto, Canada, the study drug will come at no cost, and treatment should be covered by insurance. Visit this link to learn more about the trial. READ
	Fathers with Scleroderma Needed for Survey Research Study on Parenting Researchers from the University of New Mexico are seeking participants for a study exploring the impact of symptoms, such as pain and fatigue, on parenting in fathers who have systemic sclerosis (scleroderma). Fathers with scleroderma who have children 18 years and younger living with them may be eligible to participate in the survey study. This study was approved by the UNM Human Research Review Committee (HRRC 21-209). For more information about the study and the eligibility requirements, please contact Janet Poole PhD, OTR/L, at jpoole@salud.unm.edu or (505) 272-8276.
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