Who We Are
Juvenile Arthritis Association (JAA)
Juvenile Arthritis Association (JAA) is a 501(c)3 nonprofit organization that was formed to address the enormous lack of awareness, funding and resources going to children and young adults diagnosed with pediatric rheumatic diseases.
Pediatric rheumatic diseases, often broadly categorized as juvenile arthritis, are a family of autoimmune diseases characterized by severe inflammation and pain that can occur in any part of the body. These diseases can be extremely debilitating and in some cases fatal.
A 2007 CDC study estimates that 294,000 U.S. children (1 in 250) have been diagnosed with arthritis or another rheumatologic condition. These findings establish that pediatric rheumatic diseases are more prevalent than many other chronic childhood diseases. In fact, rheumatic diseases affect more children than juvenile diabetes, cystic fibrosis, and muscular dystrophy combined.
Despite this statistic, pediatric rheumatic diseases receive far less research funding, both at the federal level and through private philanthropy, than many other diseases with far less prevalence. Best estimates place the annual total of private funding in the U.S. at around $2 million. The following table puts that figure into perspective, comparing the annual private funding of several common pediatric diseases.
|Disease||Prevalence||Private Funding (Annual)|
|Leukemia||1 in 25,000||$270m|
|Juvenile Diabetes||1 in 500||$198m|
|Muscular Dystrophy||1 in 10,000||$157m|
|Cystic Fibrosis||1 in 2,500||$126m|
|Pediatric Rheumatic Diseases||1 in 250||$2m|
In addition to the overall lack of research, there is an equally severe shortage of specialists to treat these diseases. There are fewer than 200 board certified, practicing pediatric rheumatologists nationwide. Eleven states in the U.S. have none, and nineteen more have three or fewer. Countless children are suffering the devastating consequences of inadequate access to these specialists, and many face irreversible damage caused by late diagnosis and treatment. Further, families face tremendous logistical challenges, with many traveling hundreds of miles to see a specialist.
Refers to board certified, practicing pediatric rheumatologist
Sources: Michael Henrickson, MD, MPH, American Board of Pediatrics
Even under treatment, children with rheumatic diseases face a difficult struggle. They are routinely prescribed chemotherapy, biologic medication, and steroids, all of which come with significant side effects. In addition to physical difficulties, young people diagnosed with these diseases endure equally devastating emotional hardships because there is virtually no public awareness surrounding these illnesses. In school, they are often bullied by peers and subjected to inappropriate physical demands by teachers and administrators. Likewise, young adults in the job market often face intolerance of their physical limitations and medical needs.
The Juvenile Arthritis Association is committed to the ideal that the status quo can and must be changed. Though there are other advocacy organizations focused on arthritis and rheumatic diseases, very few are focused exclusively on children and young adults. Consequently, resources earmarked specifically for pediatric rheumatic diseases remain scarce. Due to the utter lack of resources available in the fight against pediatric rheumatic diseases, the prospect of a cure is currently nonexistent.
Believing that meaningful change will require drastic action, JAA was formed to lead this charge. JAA has an ambitious agenda to bring unprecedented public awareness and private funding to pediatric rheumatic diseases in order to significantly improve the lives of individuals battling these conditions and the families fighting alongside them.