玛丽亚·阿基诺-特拉斯(Mariah Aquino-Truss)只有五岁的时候，每天都非常痛苦，她告诉妈妈托里(Tory)，她“不想再待在这里了”。Imagine hearing such an admission from your young daughter who was newly diagnosed with a form ofjuvenile arthritis(JA) known as polyarticular spondyloarthropathy.
Polyarticular spondyloarthropathy is a juvenile form ofankylosing spondylitis一种影响关节、韧带、肌腱和肌腱的慢性、长期疾病。托里感到震惊，感到悲伤，并下定决心要帮助玛丽亚和她的家人，她开始寻求帮助——这条路把她带到了关节炎基金会。
Continue readingA Dream Come True – Meet Our 2017 National Youth Honoree Mariah Aquino-Truss
When you meet Amy McCormick and her daughter, Kylie, of Hauppauge, New York, you instantly feel as though you’ve known them for years. They both consistently greet you with warm smiles and joyful hellos, chatting about their love ofHamilton, the arts and their newly adopted rescue puppy named Autumn.
Continue readingChampions of Yes: Amy and Kylie McCormick Form a Dynamic Duo to Tackle Juvenile Arthritis
Until last summer, Ellie Pruitt was your typical little girl who loved to swing, draw with chalk on the driveway and feed the fish and turtles in the pond at the back of her house in Canton, Georgia, a suburb north of Atlanta. She was funny, smart and especially witty for a soon-to-be 4-year-old (and soon-to-be big sister).
But almost a year ago, Ellie started complaining about her legs hurting all the time and feeling tired. She started playing with her toys at the kitchen table because it was too painful to play on the floor. She couldn’t sit with her legs and feet crossed, unable to bend her knees 90 degrees. Her parents thought it might just be growing pains.
Continue readingMeet the Pruitts, Warriors Against Juvenile Arthritis: “We’ve got to be upbeat and positive”
A grateful crowd cheered this morning as Jen and Keegan wheeled into Orlando for theJuvenile Arthritis Conference. This final ride marked the end of a 1,400-mile journey from New York City to Orlando by tandem bike.
珍说:“有这么多人为我们加油，真是太棒了。”“有参加会议的孩子们——其中一些人一直在跟踪我们的旅程——支持我们完成我们的旅程，这象征着我们整个旅程的意义。”Continue reading1,400 Miles for 300,000 Children – The Final Ride
When Jen and Keegan took off down the east coast, they expected a few bumps and bruises. What they didn’t expect is all of the people in thejuvenile arthritis (JA)community they would connect with along the way. On their 1,400-mile tandem bike ride from home in New York to the JA Conference in Orlando, Jen and Keegan have managed to connect with — and even stay with — several families who are in some way affected by JA.
“There’s so much about this disease that makes you feel alone in this world,” says Jen, who was diagnosed with JA when she was 11 months old. “To connect with and try to bring people together is the whole point of the trip in a way.”
Continue reading1,400 Miles for 300,000 Children- Making Connections
And, they’re off! This morning, Jen and her partner Keegan took off from Queens, N.Y. on their 1,400 mile tandem bike ride down the east coast. Their journey will take them to theJuvenile Arthritis Conference在奥兰多。While Jen admits that the next 17 days are going to be quite the journey, at the forefront of her mind as the miles pass will be the 300,000 children who are on a journey of a different kind —juvenile arthritis (JA).
珍不到一岁就被诊断为JA，她在JA社区交了很多朋友。这是一个14岁的马戏团演员，尽管他做了多次下巴手术。有个朋友因为JA的并发症刚刚在医院庆祝了她的21岁生日。这是一位艺术家兼厨师正在处理严重的葡萄膜炎。有一个九岁的孩子已经是一位经验丰富的关节炎倡导者。有一组兄弟都有JA，但仍然像其他兄弟一样混日子。
Continue reading1,400 Miles for 300,000 Children – Jen and Keegan Hit the Road!
Like many people, Jen Horonjeff is traveling this summer. Don’t look for her on any planes or trains, though. Jen is making the trip from New York City to Orlando — all on her bike.
Diagnosed with juvenile idiopathic arthritis (JIA) when she was just 11 months old, Jen is finalizing plans to ride on a tandem bike with her partner from her home in New York City to the Arthritis Foundation’sJuvenile Arthritis Conference在奥兰多。这趟1400多英里的旅程将耗时约17天。