National Scleroderma Foundation

Homepage | Forward to a Friend | Make a Donation

eLetter #992 | October 21, 2022

	Last Chance to Register for the Kids Get Scleroderma Too! Virtual Conference VIRTUAL: October 22, 2022 Don't miss your last chance to sign up for the 2022 Kids Get Scleroderma Too! Conference (KGS2). This virtual education conference is geared toward parents, guardians, and juveniles affected by scleroderma. Sign up now at the link! 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!
	Hudson Valley Paws for a Cause ZOOM: October 24, 2022; 7 p.m. Eastern The Tri-State Chapter Support Group welcomes you to their upcoming Zoom with Hudson Valley Paws for a Cause Therapy Dogs. The group will discuss the topic of pet therapy. Everyone is welcome to join! SIGN UP
	The 20%: A Virtual Support Group for Males Living with Scleroderma ZOOM: October 26, 2022; 7 p.m. Eastern Scleroderma diagnoses are less common among 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
	Teens and Parents Support Group ZOOM: October 26, 2022; 6 p.m. Mountain Calling all teens looking to connect with other teens living with scleroderma. The Albuquerque support team will have Teen & Parent Support Group meetings each month on the 4th Wednesday via Zoom at 6 p.m. Mountain. The group will be led by Debra Droux, Maria Tafoya, and Jackie Martinez. Email nmsclero@gmail.com or call 505-503-3545 to receive the Zoom meeting information. We ask that a parent or caregiver be present with their teen when the meeting starts.
	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.
	Ticket to Work Webinar Curious about how working will affect your Medicare or Medicaid benefits? Join the Work Incentive Seminar Event (WISE) webinar on October 26 at 3 p.m. Eastern to learn about healthcare and the path to employment. Learn more and sign up for the October WISE webinar at the link. SIGN UP
Advertisement