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 32ndAnnual NationalJuvenile 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.”
对于超过一半的与会者来说，今年是他们第一次体验这个为期四天的会议所提供的一切。从由顶级卫生保健专家主办的家长交流会议和特定疾病爆发会议，到关于讲述你的故事如何支持倡导和活动筹款努力的信息。
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.”
家庭从关节炎基金会主席兼首席执行官Ann M. Palmer那里听到，她谈到了基金会对支持青少年关节炎家庭的承诺，为青少年关节炎和儿童风湿病的研究捐赠了2300万美元。Ann欢迎Emily von Scheven博士，她做了一个鼓舞人心的主题演讲，关于科学研究的过程，我们现在在哪里，我们可能会看到的未来。
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 Lentiniasked 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.
在家长和年轻人参加小组讨论的同时，孩子和青少年在整个周末都参与了既有趣又有教育意义的节目。活动包括瑜伽、女演员格蕾丝·班农(Grace Bannon)的来访、当地的治疗犬，以及超级英雄艾娃和布默(Boomer)，他们带来了英雄主题的活动套件。关节炎基金会倡导团队举行了会议，讲述他们的故事，以及如何说服“脾气暴躁的参议员”支持他们的事业。超级兄弟姐妹和关节炎基金会的发展经理劳伦·麦卡利斯特带领每个年龄组的兄弟姐妹会议，为孩子和青少年提供与其他兄弟姐妹见面的机会，并讨论共同的快乐和关心的事情。
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.
最后一个环节为顶级医生和志愿者颁奖;还有五个青少年分享了他们意识到自己比关节炎更强大的时刻的故事。来自阿肯色州15岁的布兰妮·托马斯在12岁时被诊断出患有青少年特发性关节炎，她谈到了自己对投球和打垒球的热情。“关节炎让我很难打垒球，我不得不停打一段时间。在那段时间里，我学会了一些不那么痛苦的投球方法，最终我又能打球了。当我击出我的第一个击球手时，我知道我比关节炎还强壮!”
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 areStronger Than Arthritis.”
In a few weeks, we will open the secondJA Conference Eastin 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 atkbitner@arthritis.org.
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