JUVENILE ARTHRITIS ASSOCIATION
This organization has already been registered
Someone in your organization has already registered and setup an account. would you like to join their team?Profile owner : j**l@j***************s.o*g
Mission Statement
Juvenile Arthritis Association (JAA) was formed in 2012 to address the critical lack of awareness, funding and resources going to families affected by pediatric rheumatic diseases — a group of debilitating autoimmune diseases that affect approximately 1 in 250 kids, or about 300,000 children in the U.S. Despite far greater prevalence, these diseases receive about 1% of the annual funding gong to nearly every other major childhood disease. In addition, with fewer than 200 board certified, practicing pediatric rheumatologists nationwide, countless children face irreversible damage caused by late diagnosis and treatment. Further, relatively few resources exist for families to connect, build community and find support. Since its inception, JAA has striven to raise funds for research, subsidize fellowships to train new specialists, and foster community through our bi-monthly support and education groups. We distill this mission into Community, Awareness, Research, and Empowerment, or CARE.
About This Cause
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. Compare this figure to the $270 million that goes to childhood leukemia (prevalence: 1 in 25,000) or the $198 million that funds Type 1 Diabetes (prevalence: 1 in 500) and one can see the dire shortage of research funding available for pediatric rheumatology patients and families. 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. 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. To that end, JAA has begun funding research, has leveraged celebrity supporters to help raise awareness (leading to several instances of national television coverage), and has created a groundbreaking support and education program aimed at helping families connect and learn to live with a devastating chronic illness. Our biggest aim for the future is to increase our fundraising to also begin subsidizing pediatric rheumatology fellowships, in order to help address the dire shortage of these specialists across the U.S.