Tag Archives: juvenile arthritis

ambassador spotlight maya miserlain
Friday, July 20 |Arthritis Foundation

Junior Ambassador Spotlight – Maya Miserlian

By Maya Miserlian

My name is Maya Miserlian, I’m 15 years old, and I am one of 300,000 children in the US withjuvenile arthritis(JA).

At the age of 11 I was diagnosed with Chronic Recurrent Multifocal Osteomyelitis (CRMO), a rare bone disease that is one of the many diseases included in the definition of arthritis umbrella. My diagnosis came after over a year of being told my aching bones were just ‘growing pains’.CRMOaffects one in every million people, which has left me feeling alone in the past, because I did not know anyone else with my diagnosis. In the past year I was introduced to the Arthritis Foundation, which has played a big role in my journey with CRMO. Iadvocate for arthritisas aJunior Ambassadorfor the Foundation, which has allowed me to take control of my disease and advocate for myself and others with JA. I consider myself lucky – because I live near my specialist and was able to get on medication that works, I reached remission only three years after my diagnosis. However, easy access to a specialist is not a reality for most people.

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danielle highley state of union
Tuesday, January 30 |Arthritis Foundation

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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Friday, September 15 |Arthritis Foundation

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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Juvenile Arthritis Advocates
Monday, July 11 |Arthritis Foundation

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
Wednesday, October 7 |Arthritis Foundation

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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