While Philadelphia, Pennsylvania is typically known for historic events such as the birthplace of our nation’s Declaration of Independence and Constitution, it was also the site of the second of two National Juvenile Arthritis Conferences. In historic fashion, the Arthritis Foundation welcomed over 1,000 more children and their families to the East conference, bringing the total number of attendees in 2016 to over 2,000 – the highest numbers to date!
After the 2015 JA Conference in Orlando, Florida hosted approximately 1,750 attendees, the Arthritis Foundation made a commitment to two JA Conferences in service of reaching more children and their families affected by juvenile arthritis and related rheumatic diseases. From the sandy beachfront of Kapolei, Hawaii to the bustling city of New York, New York, over 1,000 more children and their families traveled to Philadelphia to share a weekend full of hope, networking and education.
“The JA Conference was created to give families like us the opportunity to discover that JA doesn’t define us. It doesn’t control us and it doesn’t stop us,’ remarked 2016 JA Conference Chair, Colleen Ryan. “Together we have built each other up, held one another’s hands, been a shoulder to cry on and a much needed sounding board. Together we are strong. And together we are proving we are all Stronger Than Arthritis!”
For more than half of the conference’s attendees, this year was their first time experiencing everything the four-day conference had to offer. From Mom and Dad-specific networking opportunities and disease-specific breakout sessions hosted by top health care experts, to information about how telling your story can further support advocacy and event fundraising efforts.
Ronda Mack and her daughter Taylor, 14, of Huntsville, Arkansas, attended the JA Conference for the first time. When asked about her expectations for her first conference, Ronda said, “I mainly wanted to take it all in and observe, but [the conference] was so much more than that. Everyone was so nice and I learned so much; it was an experience I’ll cherish forever.”
Taylor adds, “I expected the JA conference to be kind of boring and a lot of lecturing, but it wasn’t that at all! It was about learning and meeting people with similar life challenges. I definitely gained a lot of knowledge that can help me along my JA road! It has showed me so much, and I am forever appreciative for everything the Arthritis Foundation has done for me!”
Families heard from Arthritis Foundation President and CEO Ann M. Palmer, who talked about the Foundation’s commitment to supporting families affected by juvenile arthritis, dedicating $23 million dollars to juvenile arthritis and childhood rheumatic diseases research. Ann welcomed local Philadelphia pediatric rheumatologist Dr. Edward Behrens, who gave an inspired keynote presentation about the process of scientific research, where we are now and what we exciting things we might expect to see in the future.
Arthritis Foundation Board Chair Michael Ortman opened Saturday’s general session by telling his story about his son Daniel, who also attended the JA Conference. Michael reminded families that while there is so much uncertainty with this disease, there is always hope. “We find strength from each other, we learn and grow together. This is how we are stronger than arthritis!”
Parents and teens were then treated to a Young Adult Panel, moderated by Jennifer Horonjeff, PhD, and featured young adults Ricardo Berrios, Kate Lambos, Joshua James and conference guest, actress Grace Bannon. They each spoke about their experiences growing up with rheumatic diseases, what they are doing now and overcoming everyday obstacles. During the Q&A, a mother asked for advice on helping their kids through different challenges, like administering medication on a weekly basis. Panelists Kate Lambos said, “sometimes all I wanted was to lay in bed with my 50 stuffed animals all around me, and my mom just let me do what needed to help me get through it. It made me feel better in that moment, and that’s all I needed!”
While parents and young adults were taking part in their breakout sessions, kids and teens participated in both fun and educational programming throughout the weekend. Activities included yoga, a visit from actress Grace Bannon, local therapy dogs and superheroes Ava and Boomer who brought hero-themed activity kits.
On Sunday morning, attendees showed off their Walk to Cure Arthritis and Jingle Bell Run team shirts while enjoying breakfast and visiting exhibits. After dropping their kids and teens off one last time, Moms, Dads and Young Adults each had their own opportunity to share their reflections on the weekend and how their strength and hope grew throughout the conference. Ronda said, “The school session and Mom’s networking sessions were my favorite over the weekend. After I spoke in the Mom’s session, over 10 mothers came up and connected with me. It was amazing!”
The final session presented awards to top physicians and volunteers; along with seven teens that shared their stories of the moments they realized they were stronger than arthritis. 14 year-old Kylie McCormick from Long Island, New York said, “Now I’ve taken ownership of my arthritis. After this moment of bliss I grew up to conquer things like acting and dancing in heels, making my own medical decisions, and advocating for arthritis wherever I go. When I was initially diagnosed with arthritis, I used to think, “I have arthritis – I can’t do that.” Now I think, “I have arthritis – I can do that anyway!”
Arthritis Foundation President and CEO Ann M. Palmer closed the conference by giving a heartfelt thank you to 2016 Conference Chair Colleen Ryan, who chaired her third JA Conference. “I have so much respect for the way she has been here for the Arthritis Foundation, her amazing leadership and how she handles everything with such dignity and grace,” said Ann. “When I think about Colleen Ryan, I think about how she’s just an amazing mom. She’s so nurturing and encouraging – I think most of us in the room have experienced that.”
And with that, the 2016 JA Conference East was adjourned. Colleen remarked, “Whether you traveled from near or far, were a first-timer or a veteran, were excited or nervous, you made it here to Philadelphia and will leave stronger than ever.”
Thank you to all of our attendees, from Phoenix to Philadelphia, for making the 2016 National Juvenile Arthritis Conference a historic success. We hope to see your next year!
JA Conference Coverage on Philly.com
Philly.com did a feature on our juvenile arthritis mission focus and JA Conference event, as well as spotlighting the unique and pressing needs of our JA families and children. Check it out here!
2017 Juvenile Arthritis Conferences: Save the Date(s)!
2017 National Juvenile Arthritis Conference Locations / Dates:
Juvenile Arthritis Conference – Houston
Location: Houston, Texas
Dates: July 13-16, 2017
Hotel: Hilton America’s Houston
Juvenile Arthritis Conference – Indianapolis
Location: Indianapolis, Indiana
Dates: August 10-13, 2017
Hotel: Hyatt Regency Indianapolis