Tag Archives: juvenile arthritis advocacy

stephanie kwiecien

Ambassador Spotlight – Stephanie Kwiecien

Advocating for the arthritis community, says 27-year-old Stephanie Kwiecien, has restored the voice that bullying shut down.

“Advocacy is really important to me because it gave me back the voice I thought I’d lost,” says Kwiecien, who was diagnosed with juvenile rheumatoid arthritis (now known as juvenile idiopathic arthritis) when she was 18 months old. During her elementary and middle school years, Kwiecien’s peers were unfazed by her condition and her teachers were understanding. But high school was different.

Continue reading Ambassador Spotlight – Stephanie Kwiecien

ambassador spotlight maya miserlain

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 with juvenile 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’. CRMO affects 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. I advocate for arthritis as a Junior Ambassador for 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.

Continue reading Junior Ambassador Spotlight – Maya Miserlian

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 have juvenile 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.

Continue reading Junior Ambassador Spotlight – Ethan Berkovitz, Ohio

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’s 2017 Advocacy Summit.

Attendees will include an estimated 100 kids and teens who will participate in a special Kids and High School Summit track. Uniquely designed for kids/teens who are affected by juvenile arthritis and 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 about barriers to health care and motivating them to consider all people who live with arthritis when they design health care legislation.
Continue reading More than 100 Kids and Teens to Meet with Members of Congress at Advocacy Summit