National Scleroderma Foundation

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eLetter #993 | October 28, 2022

	Thank You for Attending Kids Get Scleroderma Too! Thank you for attending the Kids Get Scleroderma Too! Virtual Conference. We are grateful for all of our wonderful speakers and attendees who joined us at the Conference! Don’t worry if you were unable to attend; the Conference will stay live for 30 days!
	Please help us track our progress toward our FY 2023 goals! Please take a quick pulse survey. 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!
	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
	El Grupo Bilingüe de Apoyo El Grupo Bilingüe de Apoyo de la Fundación Nacional de Esclerodermia te invita a su charla educativa vía zoom “Cuidado Dental en Esclerodermia”. Fecha : 29 de Octubre, 2022 Hora: 10:00 am EST Por favor envíe sus preguntas al correo electrónico miamiradgroup@gmail.com. A continuación, vínculo para registrarse al evento. REGISTRARSE
	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
	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 3rd. Our sincere gratitude goes to A Lasting Mark Foundation for this special gift!
	Delaware Valley Education Event ZOOM: November 2, 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 of 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.
	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 Celeste Freeman On Episode 33 of Mogil's Mobcast, Ann talks with Celeste Freeman, an occupational therapist and certified hand therapist. Celeste has been working with individuals with scleroderma for around 15 years. Recently, she was awarded the Paul Brand Award through the American Society of Hand Therapists. In this episode, they will discuss the anatomy of a scleroderma hand and the patterns of damage, strategies for care, and gadgets that can make lives easier for those living with scleroderma. LISTEN