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 1,000morechildren and their families to the East conference, bringing the total number of attendees in 2016 to over 2,000 – the highest numbers to date!
2015年在佛罗里达州奥兰多举行的JA大会吸引了约1750名与会者，关节炎基金会承诺将举办两届JA大会，以服务于更多受青少年关节炎和相关风湿病影响的儿童及其家庭。从夏威夷的卡波雷的沙滩海滩到繁华的纽约，超过1000名儿童和他们的家人前往费城，分享一个充满希望、社交和教育的周末。
“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补充道:“我原以为JA会议会很无聊，而且会有很多演讲，但事实并非如此!它是关于学习和认识有类似生活挑战的人。我学到了很多知识，这些知识可以帮助我在JA的道路上走下去!它给了我很多，我永远感激关节炎基金会为我所做的一切!”
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!”
然后，家长和青少年参加了一个由詹妮弗·霍伦杰夫博士主持的青年小组，与会者包括年轻人里卡多·贝里奥斯、凯特·兰博斯、约书亚·詹姆斯和会议嘉宾、女演员格蕾丝·班农。他们每个人都讲述了他们在风湿疾病中成长的经历，他们现在在做什么，克服日常的障碍。在问答环节中，一位母亲询问了帮助孩子应对不同挑战的建议，比如每周给孩子服药。小组成员凯特·兰博斯说:“有时候我只想躺在床上，周围都是我的50个毛绒玩具，我妈妈只会让我做需要做的事情来帮助我度过难关。这让我在那一刻感觉好多了，这就是我所需要的!”
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 theirWalk to Cure ArthritisandJingle Bell Runteam 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
作为一个家庭最好的体验!