Caring for Kids With Scleroderma
A pediatric conference for parents and children
April 24 - 25, 2026
Oak Brook, IL
About the Conference
You want the absolute best for your child. But maybe you are struggling to understand your child's scleroderma diagnosis, treatment options and a long-term strategy for managing it. Perhaps you are seeking a supportive community of fellow parents and caregivers who are facing similar challenges as you. Join us for a unique event designed just for parents of kids and teens with scleroderma.
Hear from experts in the field as well as others who are going through similar experiences. You’ll have a chance to get your questions answered. This event is designed to educate you so that you can make more informed decisions, while providing you and your child with the inspiration and hope you need to move forward with confidence.
Registration is free and meals are included. Please register by April 17.
Why Should You and Your Child Attend?
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Learn about treatment options from top experts in scleroderma
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Connect with others who understand what you're going through
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Build a robust support network for you and your child
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Become your child's best advocate, both at the doctor's office and beyond
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Strategies for improving mental health while reducing stress and anxiety
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Activities for kids designed to inspire hope and confidence
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Free registration and meals included
Speakers & Topics
Caring For Kids with Scleroderma is about getting answers to tough questions, so take this opportunity to learn from experts in the field.
Pediatric Research and Scleroderma Medication
Dr. Kathryn Torok
Pediatric Rhuematologist
Director, Pediatric Scleroderma Clinic at UPMC Children’s Hospital of Pittsburgh
This talk, by Kathryn Torok, MD, will discuss the latest in pediatric research and medication recommendations for pediatric patients. This is a must-attend talk to learn about how you can support your child. Dr. Torok is a board-certified pediatric rheumatologist and director of the Pediatric Scleroderma Clinic at UPMC Children’s Hospital of Pittsburgh. Dr. Torok helped to create and implement the Scleroderma Clinic, which provides treatment for children with localized and systemic scleroderma (LS and ScS). Along with treating patients, Dr. Torok has been involved in a multitude of research projects including serving as principal investigator and coordinator of the National Registry for Childhood Onset Scleroderma.
Scleroderma Overview & Treatment
Dr. Marisa S. Klein-Gitelman
Division Head, Rheumatology
Professor of Pediatrics, Northwestern University Feinberg School of Medicine
Dr. Marisa S. Klein-Gitelman will share her invaluable insights on pediatric scleroderma and the journey ahead for your child. As a top specialist in the field, she’ll provide expert guidance, answer your questions, and offer practical advice to help you navigate treatment and care. The talk will encompass information about morphea (skin only), limited and systemic sclerosis. Specific treatments, and challenges with treatment plans will be discussed.
Achieving Wellness through Art Therapy
Dr. Jennifer La Civita
Associate Professor, Psychologist, Art Therapist, Department Chair
Adler University, Chicago
Managing chronic illness can create uncertainty and anxiety, taking a toll on our mental health. Art is a powerful tool with a range of benefits such as helping with pain management, alleviating discomfort, and fostering emotional and physical support. Adaptive art making increases self-efficacy, self-confidence, empowerment, and provides a helpful way to navigate scleroderma.
While instilling a sense of belonging and community, Dr. La Civita will guide parents and kids through this interactive session that explores the use of art, music, and play as a form of wellness. Join her as she shares all sorts of adaptive art supplies, materials, and art processes that can be enjoyed by everyone!
Yoga Adventures for Kids with Scleroderma
Brooke Hornbaker
Certified Yoga Instructor
Join us for a fun, gentle, and imaginative yoga class designed especially for kids with scleroderma! Through playful movement, breathing games, and guided adventures, children will stretch, wiggle, and explore their bodies in a safe, supportive environment.
The session includes:
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Warm-up games to wake up the body
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Animal-inspired poses and yoga adventures
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Partner and/or group activities
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Relaxation and guided imagination to end on a calm, happy note
All abilities are welcome. Every pose is optional, and every child moves at their own pace. Come ready to play, breathe, and have fun while celebrating what your amazing body can do! Feel free to adjust anything you would like. If we end up having a little bit older kids in the kids class, I can alway adjust the verbiage for that age.
Panel Discussions
Our panel discussions will allow you to hear from both parents and teens who have lived experience with scleroderma. They will share their insights and help answer any questions you may have about what to expect. Our panelists have been through it, so they know how valuable practical advice and encouragement is for navigating scleroderma. Connect with others who have walked a similar path while learning more about how to be there for your child.
Workshops & Activities
We're bringing you a day that is equally engaging for kids and adults. There will be various opportunities throughout the day for kids to create, to interact with their peers and to find joy. Our goal is for them to leave feeling supported, hopeful and more confident.
Conference Schedule
FRIDAY
5:00 - 6:30 pm Welcome Reception/Networking
SATURDAY
8 - 9 am Registration & Networking Breakfast
9:00 - 9:30 Welcome & Opening Remarks
9:40 - 10:00 Ice Breaker, Introductions
10:00-11:15 Dr. Klein-Gitelman, Scleroderma Overview
10:30 - 11:15 Kids: Group Activity
11:15 - 11:30 Break
11:30 - 12:30 Jennifer LaCivita, Achieving Wellness Through Art Therapy
12:30 - 1:30 Lunch
1:30 - 2:30 Kids/Teen Panel
2:30 - 3:30 Dr. Torok, Pediatric Research and Medication Recommendations
2:30 - 3:30 Kids: Group Activity
3:30 - 3:45 Break
3:45 - 4:30 Dr. Torok, Q&A
3:45 - 4:30 Kids: Group Activity
4:30 Closing Remarks
5:00 Reception for Parents
Getting There
Map and Hotel Accommodations
Hyatt Lodge Oak Brook
Conference Center
2715 Jorie Blvd
Oakbrook, IL 60523
Hotel Accommodations
For those interested in hotel accommodations, there is a room block with a limited number of rooms at a special rate of $179, available for Friday, April 24 only. Register early to take advantage of this deal!
Deal expires, Friday March 26!
Community Health Policy
To help protect our scleroderma community, we strongly encourage all attendees to follow illness prevention guidelines. If you are experiencing symptoms of COVID-19, the flu, a cold, or any contagious illness, such as fever, cough, sore throat, congestion, or feeling unwell, or if you have recently been exposed to someone who is ill, we kindly ask that you stay home.
Surgical masks will be available onsite and remain optional. For those who may be at higher risk or who prefer to be around others wearing masks, designated seating areas will be available where masks are required.
Thank you for helping us create a safe, inclusive, and caring environment for everyone.