National Scleroderma Foundation

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eLetter #989 | September 30, 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! Do not forget to sign up for the Kids Get Scleroderma Too! Paint Party on Sunday, October 23, 2022 at 1 p.m. Eastern! The Paint Party is for kids ages 6-17. You can sign up now at the link. 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.
	Parents of Children with Scleroderma Support Group ZOOM: October 5, 2022; 7:30 p.m. Eastern As a parent, you would do anything for your child. When you find out your child has scleroderma, you are likely filled with shock, confusion, and fear. Luckily, the National Scleroderma Foundation Michigan Chapter designed a group that helps parents of children with scleroderma. Each meeting, the group will focus on different juvenile scleroderma topics, from managing the needs of everyone in the house to self-care for caregivers. The group would like individuals to join them, ask questions, find comfort, and leave with a sense of hope and support for you and your child. The group meets virtually via Zoom on the first Wednesday of even months (e.g., June, August, etc.) at 7:30 p.m. Eastern. SIGN UP
	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
	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.
	Mogil's Mobcast with Dr. John Pauling On the recent episode of Mogil's Mobcast, Ann speaks with Dr. John Pauling, a consultant rheumatologist at North Bristol NHS Trust and an Honorary Senior Lecturer at the University of Bristol Medical School in the United Kingdom. The episode will discuss antibodies, their definition, different types found in scleroderma patients, and what those antibodies tell us about a scleroderma patient's diagnosis. If you are interested in learning more about antibodies and scleroderma, visit the link and listen to the new episode! LISTEN
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