National Scleroderma Foundation

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eLetter #994 | November 4, 2022

	Thank You to Our Caregivers November is National Family Caregivers Month – an opportunity to educate and increase support for caregivers. We understand that family members and friends are also impacted by a loved one’s diagnosis and medical journey. Learn more about the role of caregivers and available support. READ
	4 Star Charity Navigator We’re celebrating another year of four stars! For six years in a row, Charity Navigator has rated the National Scleroderma Foundation with four stars – its highest rating! Check out why you can give with confidence! READ
	A Lasting Mark Foundation Our friends at A Lasting Mark Foundation would like to spread some holiday cheer and comfort to our pediatric scleroderma community! Learn more about the incredible mission of A Lasting Mark Foundation here. A Lasting Mark Foundation would like to send a Holiday Swag in a Bag to children and teens up to 18 years old living with scleroderma. To receive your special gift, fill out the form here. Please be sure to use the code: Warmwishes. The deadline to order is December 3. Our sincere gratitude goes to A Lasting Mark Foundation for this special gift!
	Stem Cell Transplant in Scleroderma ZOOM: Friday, November 18, 2022; 3 p.m. Eastern During this virtual educational session, you will hear from patients who have benefited from stem cell therapy, how the therapy works, and what trials are currently available. SIGN UP
	BIPOC (Black, Indigenous, People of Color) Support Group ZOOM: Sunday, November 13, 2022; 4 p.m. Eastern Learn important information about family support during the BIPOC support group's November 13 virtual meeting. SIGN UP
	Scleroderma Young Adults Needing Connection Group Meeting ZOOM: November 11, 2022; 7 p.m. Eastern If you are between the ages of 18 and 40 with scleroderma, join the Scleroderma Young Adults Needing Connection (SYNC) group. You can learn more and sign up at the link below. 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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