In the United States, nearly 300,000 children have juvenile arthritis (JA). The Arthritis Foundation has upheld its unwavering promise to assist them and their caregivers for 65 years.
Ann M. Palmer, Arthritis Foundation president and CEO, says, “The Foundation has an unparalleled commitment to make a difference in these families’ lives.”
A Welcoming Home for JA Families. The Arthritis Foundation provides opportunities for parents and children to meet other families at events, such as education days and family fun outings, in locations across the country. These connections are vital. They create friendships that last a lifetime, expanding the AF’s extended family network. Newly diagnosed families receive a “Power Pack” full of resources and information to help them on their unexpected journey.
The JA Conference. In the summer of 2014, the Arthritis Foundation celebrated the 30th anniversary of the annual Juvenile Arthritis Conference, its signature national event that enables families to connect, learn and make lifelong friends. Chris Andersen, of Nevada, Iowa, first experienced the conference 10 years ago when he and his family attended on a Foundation scholarship. His daughter, Nikki, had been diagnosed with JA just a few months before.
“We were clueless,” Chris remembers. “The Arthritis Foundation opened a window to our ‘new normal.’ We got the answers we needed and met other JA families who helped us adjust.”
JA Camps. The Foundation hosts dozens of JA camps nationwide. These camps provide a time for kids to play, gain self-confidence and make lasting friendships. Campers get to meet other kids who live with the same challenges and limitations, in a safe and encouraging environment. “Camp is my second family,” says Hanna S. “One week at camp makes my whole year. It is such a neat place. I have met so many lifelong friends there.”
KidsGetArthritisToo.org Website. The AF’s website, KidsGetArthritisToo.org, features many timely and relevant resources, including news about the latest treatments, an educational rights toolkit, stories of kids and teens told in their own words and more.
JA Research. Past decades of research investment in JA research have paid off. The Foundation funded research that was key to discovering the first biologic drug for JA, revolutionizing treatment and dramatically improving outcomes. As a result, today, far fewer children depend on wheelchairs than ever before.
The Foundation’s research strategy is finding better treatments today, while seeking the cure of tomorrow. A major funding initiative is the CARRA Registry, a nationwide database utilized by researchers in the Childhood Arthritis and Rheumatology Research Alliance, or CARRA. The breakthroughs it generates will soon make personalized medicine a reality. As a founding and ongoing funder of the database and infrastructure, the Foundation is leveraging a network of more than 400 leading researchers and physicians to fuel rapid scientific discovery.
Perhaps most important, the Foundation is working with the world’s best scientists to find a cure.
Access to Specialists and Treatments. Because of the severe shortage of pediatric rheumatologists, the Arthritis Foundation is leading a major drive to increase the number of physicians specializing in JA. Ensuring access to medications and treatments is an advocacy priority.
“With the Foundation, we have a voice looking out for JA families,” says Kate Kuhns, of Altoona, Iowa, whose daughter Delaney, 11, has juvenile arthritis. In March 2014, they traveled to Washington, D.C., for their fourth Kids Advocacy Summit to urge Congress to do more for JA families.
“The Foundation brings us together,” Kate says. “They give our kids a chance to do things they wouldn’t get to do otherwise.” —ANTHONY WILLIAMS