National Scleroderma Foundation

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eLetter #988 | August 23, 2022

	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
	The 20%: A Virtual Support Group for Males Living with Scleroderma ZOOM: September 28, 2022; 7 p.m. Eastern Scleroderma diagnoses are less common amongst males. In fact, only 20% of individuals living with scleroderma are male. We have designed a support group, especially for males with scleroderma. In it, you will learn scleroderma tips and resources and find support from others in your position. Each meeting, we will focus on a different topic from mental health to intimacy and so much more. The group meets on the fourth Wednesday of the month (with some exceptions) from 7 to 8 p.m. Eastern. SIGN UP
	3 Reasons to give through the CFC Federal employees and military personnel (including retirees) can donate to the Foundation through the Combined Federal Campaign (CFC). Why give through the CFC? Here are 3 great reasons: 1. Give through Payroll Deduction. Designate recurring gifts from each paycheck for a greater impact over time. 2. Unrestricted Funds for the Foundation. Your gifts will support our mission wherever they are needed most. 3. Give for Collective Impact. Changemakers like the federal community can help countless people with scleroderma when they give through the CFC. To give to Foundation through the CFC, simply visit the CFC’s online pledge portal and choose #10089.
	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
	Tri-State Chapter Presents Albany & Rochester Educational Roundtable ZOOM: October 1, 2022; 1 p.m. Eastern The Tri-State Chapter will host their Albany & Rochester Educational Roundtable on October 1, 2022. If you are interested in learning how to advocate for your own health, sign up today! All are welcome to join. 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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