Category Archives: Juvenile Arthritis

danielle highley state of union

Danielle Highley: CHIP Recipient and Special Guest at the State of the Union Address

On Monday, Danielle Highley of Deer Lodge, Montana, and her mother flew over 2,200 miles to Washington, D.C. with Montana Sen. Steve Daines to attend today’s State of the Union address. Sen. Daines invited Dani, age 9, and her mother, Glory, to join him after he told Dani’s story on the floor of the U.S. Senate earlier this month, urging his colleagues to support long-term CHIP funding.

CHIP, the Children’s Health Insurance Program, was created over two decades ago with overwhelming bipartisan support. The program insures vital health care for nearly 9 million children across the country. In September 2017, Congress allowed funding to expire, and the program was in danger of ending coverage for those children. Last week, Congress extended funding to CHIP for six years.

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Junior Ambassador Spotlight – Ethan Berkovitz, Ohio

From Ethan Berkovitz

My name is Ethan Berkovitz, I am a 16-year-old high school sophomore and my favorite sports are soccer and futsal, a type of indoor soccer with five players per team. I play on the U.S. Youth Futsal 16-and-under National Team, and this summer I got to compete and represent our country in Costa Rica. I have been playing soccer since I was 3 years old – and I havejuvenile arthritis.

I didn’t always have juvenile arthritis. It all started when I was 8 years old, when I started having pain in my legs, hands and wrists. I thought I was having growing pains, but it got worse and worse in just a few short months. I couldn’t even walk down the stairs, or to the bus stop, so my dad had to carry me. Sometimes, I didn’t make it to school because I didn’t feel very well and I would get fevers, so I felt really sick. I loved playing all kinds of sports back then with my friends and I was on lots of different teams. I also would ride my bike, skateboard, rollerblade and much more.

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2017 Kids and Teen Advocacy Summit

More than 100 Kids and Teens to Meet with Members of Congress at Advocacy Summit

Arthritis is not just your grandparent’s disease, and at this year’s Advocacy Summit, our young participants will tell Members of Congress that kids get arthritis, too!

On March 6 and 7, more than 400 people affected by arthritis from all across the country will convene in Washington, DC, as part of the Arthritis Foundation’s2017 Advocacy Summit.

Attendees will include an estimated 100 kids and teens who will participate in a specialKidsandHigh SchoolSummit track. Uniquely designed for kids/teens who are affected byjuvenile arthritisand childhood rheumatic diseases, this track includes interactive activities that will empower them with the skills and confidence they need to raise awareness for the arthritis community, young and old, and help change perceptions of this disease. Then they will meet with Members of Congress, educating them aboutbarriers to health careand motivating them to consider all people who live with arthritis when they design health care legislation.
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Juvenile Arthritis Advocates

Young Advocates in Pennsylvania Speak Out

School is out, so now what do you do to engage your kids? On June 29, a number of parents took their families to Harrisburg, PA, to participate in the 2016 Pennsylvania Advocacy and Access Day. Some of the youth were already pros having attended previous advocacy days and ourAdvocacy Summit in Washington, DC. For others it was a first time experience.
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pediatric rheumatologist shortage

Bringing The Fight For Families To Capitol Hill

JA-Conference-fingerprints-arthritis-foundation-briefingThis week, the Arthritis Foundation, alongside theAmerican College of Rheumatology (ACR)and theNational Psoriasis Foundation (NPF), advocated for the arthritis community on Capitol Hill by raising awareness concerning the shortage of pediatric rheumatologists across the country and the difficulties families face in obtaining treatment forjuvenile arthritis.

AF首席执行官安·帕尔默(Ann Palmer)作为本次演讲的主持人,首先与希尔的工作人员讨论了美国缺乏儿科风湿病医生的问题;she also offered an anecdote from theJA Conference in Julywhere children expressed their desires to plead to members of Congress for their assistance obtaining improved access to doctors in order to feel less pain and to help find a cure for JA.

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One Special 13-Year-Old With Juvenile Arthritis is Raising Awareness & Making a Huge Impact

Meet Kayla Abramowitz. Kayla is founder and Chief Kid Officer ofKayla Cares 4 Kids, aKayla-Abramowitznonprofit organization that collects and distributes entertainment items for kids – including DVDs, gaming consoles, magazines and books – to hospitals and Ronald McDonald Houses all over the country in an effort to “help sick kids feel better one smile at a time.”

Kayla came up with the idea for Kayla Cares 4 Kids after extended hospital stays of her own, in addition to her 9-year-old brother Ethan’s numerous hospital trips due to chronic illness. Kayla and Ethan both have Crohn’s disease and juvenile arthritis; Ethan also has eosinophilic esophagitis, gastritis and gastroparesis, and uses a feeding machine.

当2013年3月Kayla Cares 4 Children成立时,Kayla最初的目标是收集100张dvd捐给迈阿密儿童医院,但《棕榈滩邮报》上一篇关于她的文章带来了巨大的捐款响应。该组织发展迅速,向40个州的医院、医疗机构和麦当劳之家捐赠了6500多张dvd、书籍、视频游戏和电子产品!

Just this week, Kayla won the Young Entrepreneurs Academy Saunders Scholars competition at the America’s Small Business Summit in Washington, DC! While there, she also met with U.S. Reps. Patrick Murphy and Louis Frankel on Capitol Hill to advocate for arthritis. Kayla and her mother, Andrea, have been strong Advocates for arthritis and involved with the Arthritis Foundation for the past few years. Kayla will be attending theJuvenile Arthritis Conferencethis July.

To get involved in Kayla Cares 4 Kids, visitwww.kaylacares4kids.org.