From the San Francisco bay to the shores of Boston, Massachusetts, over 1,000 children and their families, young adults and health care professionals descended upon the desert of Phoenix, Arizona for the 32nd Annual National Juvenile Arthritis Conference. The first of two JA Conferences this year hosted by the Arthritis Foundation brought together first time attendees and veteran families who have returned to the annual conference.
“I’ve learned that no matter where you are in your journey, no matter what your diagnosis or reason for coming – your struggles, joys or everyday limitations – you will find hope here,” said Colleen Ryan, the 2016 JA Conference Chair. “You’re going to feel it and believe it. Individually and collectively, we are 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 parent networking sessions and disease-specific breakout sessions hosted by top health care experts, to information about how telling your story can support advocacy and event fundraising efforts.
The Shirkey family from Bentonville, Arkansas said, “there is so much information and so much to take in, but it’s great to be here among so many families that truly understand. Our daughter was diagnosed less than a year ago, so everything we are learning is really helpful.”
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 Dr. Emily von Scheven who gave an inspiring keynote presentation about the process of scientific research, where we are now and what 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 and reminding 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 local young adults Joey Offenberger, Jeremy and Renee Forsyth 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, 2016 Walk to Cure Arthritis Youth Honoree Parker Lentini asked about college and being on your own. “There are so many resources at schools to help you and support you, whether it is a refrigerator for your medication or making sure your dorm room is on the first floor. You can absolutely go to college and have that experience,” said Joey, who currently attends Northern Arizona University and is a manager at McDonald’s. The Young Adult group at this year’s conference hosted approximately 40 young adults varying in age from 18 through 35.
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. The Arthritis Foundation Advocacy team held sessions about telling their story and how to convince “Senator Grumpy” to support their cause. Super sibling and Arthritis Foundation development manager Lauren McAllister led Sibling Sessions with each age group, offering kids and teens the opportunity to meet other siblings and discuss common joys and concerns.
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.
The final session presented awards to top physicians and volunteers; along with five teens that shared their stories of the moments they realized they were stronger than arthritis. 15-year-old Britney Thomas from Arkansas, who was diagnosed with juvenile idiopathic arthritis at the age of 12, spoke about her passion for pitching and playing softball. “Arthritis made it really difficult to play softball, and I had to stop playing for a while. During that time, I learned some different ways to throw the ball that was less painful and eventually I was able to play again. The moment I knew I was stronger than arthritis was when I struck out my first batter!”
And with that, the 2016 JA Conference West was adjourned. Colleen remarked, “what a wonderful way to end the conference here in Phoenix. I hope everyone leaves here knowing they have a friend in each of us and that together we are Stronger Than Arthritis.”
In a few weeks, we will open the second JA Conference East in Philadelphia, Pennsylvania on August 11-14, 2016. We are excited and looking forward to connecting and reconnecting with new and returning families and friends.
A limited number of spaces are still available for JA Conference East! If you are interested in joining us in Philadelphia, please contact Katie Bitner at firstname.lastname@example.org.