In 2018, the Arthritis Foundation launched its Live Yes! Connect pilot program for parents of children living with juvenile arthritis and other childhood rheumatic disease. In addition to providing emotional and social support, the program offers educational resources and seminars to help parents improve the quality of life for their children. Jessica Ward, whose 11-year-old daughter Mercy was diagnosed with JA at age 4, is the sole parent facilitator for the JA parent group in Columbus, Ohio. We chatted with her to hear her insights about the parent group, including benefits, future plans and the best ways to get involved. Continue reading Live Yes! Connect for JA Parents: Q&A with Jessica Ward, JA Parent Facilitator
Join us at the externally-led JIA Patient-Focused Drug Development meeting
We are hosting, along with our partner, the Childhood Arthritis and Rheumatology Research Alliance (CARRA), the Juvenile Idiopathic Arthritis Patient-Focused Drug Development (PFDD) meeting. This meeting, driven by our patients and caregivers, will provide the U.S. Food and Drug Administration (FDA) and industry personnel with input directly from you on how this disease affects your life, your experiences with current treatments, and the need for newer and better treatments.
The Arthritis Foundation is funding a new program to help support the Childhood Arthritis and Rheumatology Research Alliance (CARRA) and the CARRA Registry (registry). Eight sites were selected to receive funding to support the salary of a dedicated registry research coordinator for one year. Until now, some sites have been short-handed for this important research position.
Researchers collect information through studies on many pediatric patients with rheumatic diseases over time and store it in the registry. Research coordinators play a critical role in making sure research studies run smoothly. Those supported by this program will:
Now, more than ever, we need you to become involved with research about your disease. Without the participation of patients and parents, research cannot advance toward a cure.
Specifically, in Juvenile Arthritis (JA), parents and patients play a critical role in research – you are experts when it comes to the issues that are important to you or your child’s health and daily quality of life.
Dr. Timothy Beukelman, a pediatric rheumatologist, has been looking at the safety of a group of drugs that are successfully used to treat children with juvenile idiopathic arthritis (JIA). One of his current research projects, called “Tumor Necrosis Factor (TNF) Inhibitors and the Risk of Malignancy in the Treatment of JIA”, was presented at the 2016 ACR conference in Washington, DC.
Continue reading Pediatric Rheumatologist & Researcher Dr. Timothy Beukelman Evaluates Cancer Risk for JIA Patients Taking TNF Inhibitors