Do you live with juvenile arthritis? Then you’re part of our extended family!
2020年，我们将在家庭聚会上庆祝联系，度过宝贵的时光。来自全国各地的JA家庭将聚集在一起，从彼此身上汲取力量，变得比以往任何时候都更强大。对于长期以来和新手一样，全国JA大会是一个好玩的地方在夏天!Continue readingIntroducing the 2020 Juvenile Arthritis Conference Theme: Family Reunion, Stronger Together
November is National Scholarship Month and the Arthritis Foundation is proud to offer the Arthritis Champions Scholarship to deserving students across the country who exemplify the Champion of Yes spirit. Formerly, the Winterhoff Arthritis Scholarship, the Arthritis Champions Scholarship program is generously funded by the Walter J. and Kathryn M. Winterhoff Endowed Scholarship Fund and the NEW Dr. Smriti Bardhan College Scholarship Fund.Continue readingArthritis Champions Scholarship
Over two long weekends in mid-July and early August, about 1,800 participants made their way to Houston, Texas, and Minneapolis, Minnesota, to take part in the 2019 National Juvenile Arthritis Conference. As in previous years, the Arthritis Foundation offered two JA Conference locations to serve even more kids, families and young adults across the country affected by childhood rheumatic diseases while also welcoming back returning veteranfamilies.Thisyear, more than 40 states were represented, including some families from Mexico and Canada. In both cities, more than half of conference participants were first-time attendees, experiencing everything the four-day conference had to offer. Kids and teens were treated to their own specialized programming, including peer-led activities, educational sessions and fun social happenings.
At the same time, parents choose their own breakout sessions throughout the day — from disease-specific sessions hosted by top doctors and health care experts to topics like educational rights in schools and transitioning from adolescent to adult medicine. Plenty of networking opportunities were available for female and male caregivers to connect and socialize with one another.
Young adults ages 18-25 also participated in their own program throughout the weekend, covering subjects such as mental health and wellness, relationships and patient engagement strategies. Guided by volunteer leaders, young adults were also able to participate in panels and speak to parents and teens, giving a positive glimpse into their own futures. The young adults group planned their own social activities and had a “night in” to hang out and network among their group.
On Saturday at each conference location, JA Awards were presented to a physician, youth leader, parent and health care professional who show exceptional leadership and commitment to the JA community. This year’s winnerswere:PaigeGoehner, DawnHafeliAward for Youth Leadership; Staci Scharnhorst, Patti Rettig Award for Health Care Professional Leadership; Dr. Richard Vehe, Earl Brewer Award for Physician Leadership; andDiAnnaWilson, Kathy Angel Award for Parent Leadership.
This year, for the first time, a new award named in honor of Steve and Liz Smith was presented to Michael and Rochelle Lentini of Tampa, Florida, for their many years of volunteer service to the JA Conference and JA community. In 2015, Rochelle chaired the JA Conference in Orlando, and has since helped shape programming for kids and teens. Michael has played an integral role in the dad sessions and onsite support at each conference.
A huge thank you to ALL attendees of the 2019 JA Conference in Houston and Minneapolis, as well as JA Conference Chairs Bob and JenniferTonning; special guests MegMaley, PaigeGoehnerand KooKooKanga Roo，以及计划委员会、现场志愿者、主题专家、医生和嘉宾演讲。
Special thanks to National Presenting Sponsor AbbVie; Supporting Sponsors Amgen, Novartis and Alpha Omicron Piand all exhibitors and in-kind donors.
JimSalanty艾伯维美国风湿病学副总裁说，该公司的使命与JA会议的使命一致:为患有幼年关节炎的儿童培养积极的体验，并为疾病管理和支持提供重要的资源。“[JA Conferences] also provide these children the valuable opportunity to meet and connect with others who may be navigating a similar journey living with their condition,” he says.
把时间留给2020年的JA大会吧，在那里我们将有一个史诗级的“家庭团聚”。我们希望在那里见到你!
JA Conference – Orlando
July 23-26, 2020
Renaissance Orlando
休斯顿今天开始了2019年全国青少年关节炎会议!
Over 800 kids, teens, young adults and their families from across the country are landing in Houston, Texas, for the first of two NationalJuvenile Arthritis (JA) Conferencesthe Arthritis Foundation is hosting this year. This week’s conference will kick off our 35th annual gathering of JA families duringJA Awareness Month, and offers a variety of events and informational program tracks focused on education, connecting with others and fun.Continue reading休斯顿今天开始了2019年全国青少年关节炎会议!
The school year is an opportunity to enjoy some of the best memories with friends. But for many kids with juvenile arthritis (JA) and other rheumatic conditions, being in school can sometimes bring feelings of isolation. Many kids with JA have never met a friend with the same diagnosis. They never get to take a break from a serious illness that’s often quite painful, makes the immune system go haywire and can be downright lonely at times.
Summer break, however, is another story! The Arthritis Foundation provides camp programs and our National Juvenile Arthritis Conference in two locations, giving kids with JA the experience of a lifetime and the chance to feel included. Meeting other kids with the same disease fosters courage and strength and teaches them how to advocate for themselves.
That’s why July is Juvenile Arthritis Awareness Month — a time when we put a spotlight on JA, so more people know what living with it is like. We also take the opportunity to encourage parents who suspect their child may have arthritis to consult a pediatric rheumatologist as soon as possible. Early diagnosis and treatment are the best bet for avoiding permanent joint damage and improving the chance of remission.
JA affects 300,000 families
An estimated 300,000 families in the U.S. face the major disruptions JA can cause, making the disease worth acknowledging and doing something about. More children battle JA than do those who have cystic fibrosis, juvenile diabetes and leukemia combined.
儿童的幼年关节炎和相关疾病与成人关节炎有一些共同点，但它们不一样。典型的症状是关节疼痛、肿胀、发红和发热。除此之外，多种JA会以不同的方式影响不同的孩子。它们可能涉及眼睛、皮肤、心脏、肺和胃肠道。
JA会让学生很难完成作业，也很难参加社会活动和课外活动。许多患有JA的孩子感到被误解和孤立。有些人欺负。Read one teen’s short memoir about living with arthritis.
Also read aboutCarsonandLaniese— two brave JA Warriors who are taking control of their challenges in ways that work for them.
What can you do to make a difference?
DONATE
Your support provides the resources families need to live their best life.
CONNECT
SHARE INSIGHTS
Ways to help raise awareness
Helping get the word out about juvenile arthritis and other pediatric rheumatic conditions will generate more support for research and resources.
IN A WORLD… where everyday kids become WARRIORS and battle arthritis as the JA League!
All kids and young adults with juvenile arthritis and other rheumatic conditions are heroes —members of ourJA League. Every day, these Warriors battle the challenges that try to hold them back. But in the end, WE WIN! Don’t miss the latest, greatest blockbuster, starring YOU — connecting with other JA superstars.Continue readingComing Soon to a City Near You: The 35th Annual National Juvenile Arthritis Conference
Below are excerpts from a blog posted onTeen Ink雷克萨斯·伊莎贝尔，16岁，俄亥俄州托莱多市。她提交的关于童年患关节炎的文章是一个全国性网站的一部分，该网站让青少年有机会就影响他们生活的问题发表创造性的作品和意见。文章发布后不久，她的博客就成为了回忆录的首选。
Lexus has supported the Arthritis Foundation for several years, including participation inWalk to Cure Arthritis和《铃儿响叮当快跑》。她还参加了JA夏令营，并代表青少年关节炎社区接受媒体采访。
Dear Juvenile Rheumatoid Arthritis,
You are the term that has been engraved into my soul since birth. You are genetic and you manipulate my immune system to think there is something wrong with my joints. My immune system attacks me, causing inflammation and pain.
You’re a 7-year-old girl with an innocent face, wincing in pain. You are the smell of antiseptic as she enters the infinite number of hospitals and doctors’ offices. You taste like the toxic medication that chokes the girl twice a day. You feel like the piercing needles penetrating her skin, tears racing down her face, the constant, throbbing pain that stole away her innocence.
Most of all, you are the sounds you cause. You’re the “Mommy, it hurts,” as I scooch down the stairs because I can’t take the pain. You’re a mother screaming, “Tell me what’s wrong with my baby!” You’re the taunts of the children. You are me.
I want to thank you for this. If I was not bound to you, I would not be the person I am. I’ve become a compassionate, stubborn, determined young lady who wears her heart on her sleeve. I want to change the world. I want to help people and see the impact I make. I have this dream because of what you put me through. I don’t want others to be put through this, so I will be a person who guides them through their journey.
是的，我很感激你，但我绝不会把你强加在别人身上。你是遗传。你本可以突然袭击我的姐妹。我很乐意为他们分担这个重担。
你教会了我家庭的重要性。当你掌控我的生活时，所有人都很害怕，尤其是我。他们隐藏恐惧，拉着我的小手，我们一家人反对你。当你终于有了名字，我的祖母咪咪开始研究。我姑姑帮我打了第一针药。你对我父母的打击可能是最大的。I’m so lucky to have them because they have been so supportive along the way.
I questioned my Mimmi about why God would do this to me. I snapped at her, “If God is so great, if he really does love me, then why would he do this to me?” She looked down and grabbed my hand. “Because he knows you are strong enough.” At the time I was just a little girl who had grown up too fast. Now I’m a strong young lady who is still a little scared of the future, but I know I am strong enough. These words have guided me through my life.
Then one day, I heard these words: “I think we can say you are in remission.” I let out a shaky breath and a laugh. My joy spilled out of my eyes. For the first time in years, I felt like I could breathe. I was floating. You were the burden that weighed me down but let me go and allowed me to fly. My parents’ smiles radiated in my direction as we realized all the things that seemed impossible could now be achieved. You are a battle that I will continue to fight because I will always be their little trooper.
You can read the entire blog onTeen Ink.
Right now, somewhere nearby, there’s a child who longs to run and play and have the same kind of fun other kids his age are having. Who dreams about being pain-free without having to swallow a cocktail of pills, or feel the sting of injections, or go through hours of infusions at the doctor’s office. A kid who longs for an end to the trial-and-error approach of treating juvenile arthritis (JA) – seeing what works and what doesn’t, often with unpleasant side effects along the way.Continue readingWorld Juvenile Arthritis Day: Help Shine a Light on JA
From Cooper Landing, Alaska, to the beaches of West Palm Beach, Florida, the Arthritis Foundation is proud to host camp programs for kids and teens withjuvenile arthritis以及相关的儿童风湿病。除了为儿童和青少年提供安全可靠的露营体验，一些地方还提供家庭露营——一个让整个家庭一起参加的机会。Continue readingJA Camps Make a Life-changing Difference for Kids With Arthritis
Year after year, theArthritis Foundation’s National Juvenile Arthritis Conferencehas brought kids with rheumatic diseases and their families together for a weekend full of education, inspiration and connecting with others on a similar journey.Continue readingDeadline Fast Approaching for JA Conference Travel Awards!