A Virtual Conference for Parents & Guardians —
The 2021 Kids Get Scleroderma, Too! conference (KGS2) took place as a one-day, virtual event on October 23. There were more than 60 attendees, representing 36 families who have a child diagnosed with scleroderma. The participants were international in make-up from six countries.
KGS2 is typically intended for youth who have scleroderma; however, to relieve the pressure of yet another virtual meeting for children, youth were not the targeted audience this year. Instead, leading pediatric rheumatologists from across the United States presented programming for parents and guardians to help them navigate their child’s diagnosis and to address the needs associated with raising a child who has scleroderma.
Programming included an overview of the disease, common complications, general health guidelines, an update on pediatric scleroderma research, transitioning from pediatric to adult care, and a COVID update in addition to breakout rooms focused on localized and systemic scleroderma.
Specialists were: Natalia Vasquez-Canizares, MD, The Children’s Hospital at Montefiore; Katie Moore, MD, Children’s Hospital Colorado; Amanda Robinson, MD, Children’s Hospital of Pittsburgh; Suzanne Li, MD, Hackensack Meridian Health; Kathryn Torok, MD, Children’s Hospital of Pittsburgh; and Vidya Sivaraman, MD, Nationwide Children’s Hospital.
Although the National Scleroderma Foundation took steps to avoid overwhelming children with the drudgery of more virtual meetings, we recognized that youth do crave and do benefit from contact with each other, even if that contact is limited to the online world. To address that need, the Foundation offered a virtual “Meet Up Paint Party” for youth ages 10 to 17 following the conclusion of the educational programming.
To guide the youth through the creative discovery process, the paint party featured special guests Maggie Sepkowitz, LCSW, and Jill Blitz, PT, DPT, ATP.
Maggie Sepkowitz, LCSW, has been a clinical social worker for nearly 21 years, currently in private practice in Los Angeles, California. Most of her experience was gained at Children’s Hospital Los Angeles working with children and families living with chronic rheumatic conditions. She provided psychoeducation and therapeutic interventions to help families thrive. Maggie also worked for a local adoption agency completing Home Studies for international and domestic adoptions. Maggie has been connected with the Scleroderma Foundation for several years assisting in developing and implementing the pediatric programs.
Jill Blitz, PT, DPT, ATP, has been a physical therapist for 20 years, with the last 18 at Children’s Hospital Los Angeles Division of Pediatric Medicine outpatient and rheumatology clinics. Her research has focused on exercise in adolescents with rheumatologic involvement, which has led her to speak at multiple national and community conferences, including the American College of Rheumatology Scientific meeting and the APTA Combined Sections Meeting.
The Foundation looks forward to 2022, when the Kids Get Scleroderma, Too! conference will return to an in-person conference, July 15-17, in Bellevue, Washington. Subscribe to KGS2 eAlerts to receive email notices when online registration is available next year.
Scleroderma is a rare autoimmune disease that affects connective tissue and the vascular system producing excessive collagen that causes fibrosis in the skin (localized) or in internal organs (systemic sclerosis). More than 300,000 Americans live with some type of scleroderma. Today, the face of scleroderma includes people of all ages, genders, and backgrounds. Scleroderma can affect young parents, children, grandparents, and teenagers, causing pain, disability, and death. Thanks to the passion and dedication of volunteer leaders, scientists and supporters, great strides have been made. Yet despite these advancements, the challenges in scleroderma today are greater than ever, requiring committed resources to achieve ambitious goals and outcomes.
ABOUT THE NATIONAL SCLERODERMA FOUNDATION
The National Scleroderma Foundation is a 501(c)(3) charitable organization founded in 1998 to advance medical research, promote disease awareness, and provide support and education to people with scleroderma. Supported by a network of thousands of individuals across the United States, the Foundation aims to help people living with scleroderma find their best path.
Director of Communications