Ready for the JA Family Summit?
This annual event is special for doctors as well as their patients and families.
Kids with juvenile arthritis (JA) and their families and young adults with JA will head to Atlanta July 20 to 23 for the 40th annual JA Family Summit (formerly the JA National Conference) for a weekend of reunions, fun, education and support.
The theme for this year’s Summit, which is in person, is “homecoming.” Veterans of the event look forward to seeing friends they’ve made in previous years, and new families are warmly welcomed. There will be age-appropriate activities for young adult and kids with arthritis as well as their siblings, while parents and kids get to learn more about the various types of juvenile arthritis and how to live well with it.
The medical co-chairs of this Summit are pediatric rheumatologists Edward Oberle, MD, and Sampath Prahalad, MD, MSc. Dr. Oberle is Assistant Professor of Clinical Pediatrics in Rheumatology at Nationwide Children’s Hospital in Columbus, Ohio, and The Ohio State University College of Medicine. He is also a liaison for the Childhood Arthritis and Rheumatism Research Alliance (CARRA) and founded its Ultrasound Research Group. Dr. Prahalad is division chief of rheumatology at Children’s Healthcare of Atlanta and Marcus Professor of Pediatric Rheumatology and Professor of Pediatrics and Human Genetics at Emory University School of Medicine in Georgia. He also serves on the Georgia Local Leadership Board for the Arthritis Foundation, which he has supported for many years, and a past winner of the Foundation’s Hugh C. McLeod III, MD, Award of Excellence.
The two of them have been busy planning topics for learning sessions and lining up top-notch speakers and facilitators on topics ranging from the basics of juvenile idiopathic arthritis to nutrition and mental health to pain management and transitioning from pediatric to adult care. As medical chairs, they’re also key to deciding safety protocols, such as when the pandemic forced the conference to go virtual.
“Something for Everybody”
“There will be something for everybody, whether you’re a new parent coming for their first time or an experienced warrior back for their umpteenth visit,” Dr. Prahalad says.
Organizers took a more “family-centric” approach to planning, Dr. Prahalad says. “Many of the topics are based on feedback from the families.” For example, this year will feature a “JA Café,” where smaller groups will gather to discuss certain topics. Rather than lectures, these “round tables,” will have more of a question-answer approach and will take place four different times so people have a chance to participate more fully. Other popular sessions and highlights will return, including the Panda Clinic, in which children take their stuffed panda from station to station to visit a rheumatologist, nurse, pharmacist and others to receive “treatment,” just as they have experienced as patients.
Dr. Oberle was the Panda Clinic doctor last year — his first year attending the Summit. “I was expecting the preschool kids coming but all the kids through the teenagers, they all loved it,” he says.
An Inspiring Experience
Experiencing the Summit was eye-opening, Dr. Oberle says. “Seeing the excitement of families reconnecting with friends they’ve known a long time that they met at these conferences… I had the opportunity to talk to families, not being the doctor and focusing just on the medical aspect, but their journeys and experiences. It gave me a whole different perspective on why I do this and why it’s important and why having an event like this put on by the Arthritis Foundation is important for our patients and families.”
“The Arthritis Foundation is definitely a powerful voice for kids with arthritis,” Dr. Prahalad says, through education, community as well as advocacy. And the Foundation’s support of CARRA “is definitely changing the focus of the whole pediatric rheumatology community. There’s more research projects so there’s standardization of care,” he says. All children should have good outcomes, regardless of what doctor they see, he explains, “and part of that is more standardized treatment approaches.”
His own patients, whom he started treating as young children, are now attending and graduating college, he says. “They all have really good outcomes. That’s very satisfying compared to where it used to be. I don’t write prescriptions for wheelchairs or crutches. The kids have excellent outcomes. They’re athletes.”
Getting to spend time with patients and their families at the Summit is very rewarding, Dr. Prahalad says, and he would love to see more medical workers who work with the children participate. “We have a lot of nurses who do a lot of work behind the scenes [in the medical office], fighting insurance companies and answering calls. I’m motivated to get them involved in the conferences to be part of the experience, to get them in front of the kids and have opportunities to meet the families, because it truly is a team. I like to say it’s a joint effort,” he adds with a smile. And developing that deeper level of engagement may help others find the work as rewarding as he does.
A Family Affair
Dr. Oberle’s then 8-year-old daughter, who does not have JA, accompanied him last year and took part in sessions along with the other kids. “At the end of the meeting, she asked, ‘Can I come to this every year with you?’” he says. So this year, it will be a family affair for the Oberles as well as JA families. His wife, a marriage and family therapist who used to work with children with autism, will be leading some sessions on mental health. And both of their daughters, now 9 and 12, will be coming, too.
“I’m really looking forward to coming back again,” Dr. Oberle says. “Going through the pandemic, this has been a really hard time to practice medicine. You start to feel a little jaded and tired with the job. Being at this conference was a remarkable reminder for me of why I do this and why it’s important.”
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