The daily struggles of a child with juvenile arthritis (JA) can be heart-wrenching and frightening. Painful and debilitating flares, infusions and injections, teasing and bullying.
In the United States, about 300,000 children have arthritis, and we at the Arthritis Foundation are committed to bringing awareness to this group of diseases and the struggles of families living with the disease during July – JA Awareness month – and all year long.
“We have established juvenile arthritis as one of our four key organizational pillars because we recognize that the needs of these families are unique and pressing,” says Ann M. Palmer, Arthritis Foundation president and CEO. “The Foundation has an unparalleled commitment to make a difference in their lives. We are lifelong partners for children and the parents of children with arthritis. We are there every step of the way, offering expert content and support. We are a community, empowering our members to create a personal plan to living their best life as we forge the path to a cure. We are an organization of volunteers and staff, committed to fighting passionately to conquer arthritis.”
The Arthritis Foundation has been making a difference in the lives of JA families for decades. We funded research that was key to discovering the first biologic drug for JA. Today, far fewer children depend on wheelchairs than before.
This summer marks the 31st annual Juvenile Arthritis Conference, our signature national event that enables families to connect, learn and make lifelong friends. Chris Andersen first saw the conference in action more than 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.”
We host dozens of JA camps nationwide and hold family events in scores of communities. We also deliver informational “Power Packs” to newly diagnosed patients.
Our website, KidsGetArthritisToo.org, features many timely and relevant resources, including news about the latest treatments and opportunities to meet other families.
Because of the severe shortage of pediatric rheumatologists, we are leading a major drive to increase the number of physicians specializing in JA.
Our science 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 (Childhood Arthritis and Rheumatology Research Alliance). The breakthroughs it generates will soon make personalized medicine a reality. By funding the database and infrastructure, we are leveraging a network of more than 400 leading researchers and physicians to fuel rapid scientific discovery.
Perhaps most important, we are working with the world’s best scientists to find a cure.
“With the Foundation, we have a voice looking out for JA families,” says Kate Kuhns, whose daughter Delaney, 11, has the disease. Last March, they traveled to Washington, D.C., for their fourth Advocacy Summit, urging 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.”