The American Juvenile Arthritis Organization (AJAO) was formed in 1981 as a council of the Arthritis Foundation to serve as an advocate for, and work to improve the quality of life for children with rheumatic diseases and their families. To have the important voice of people with arthritis represented in the leadership of the Arthritis Foundation, the Arthritis Foundation created patient alliances and the AJAO Council made the decision to be the first to transition to being the Juvenile Arthritis Alliance (JAA). The action was enthusiastically approved by the Arthritis Foundation Board of Directors in 2006. This important change increased the Arthritis Foundation’s focus on the 300,000 children with juvenile arthritis by fully integrating, and expanding all juvenile arthritis activities throughout the Arthritis Foundation’s nationwide structure. The JA Alliance is a virtual community connected through the Arthritis Foundation Web site. Its members are parents, volunteers, health professionals and anyone who is impacted by juvenile arthritis.
The JAA is led by a leadership group comprised of members of the Arthritis Foundation’s Board of Directors and councils and committees who are involved in or represent the juvenile arthritis community. Dr. Carol Lindsley, MD, is serving as chair of the group during this transition time.
Juvenile Arthritis Alliance (JAA) Priorities
The Arthritis Foundation has a 60 year history of helping children, teens, and adults with arthritis. Dr John Klippel, CEO, has designated juvenile arthritis (JA) one of the organization’s top three priorities. With this designation, the Arthritis Foundation is highlighting its commitment to improving the health of children with juvenile arthritis by shifting the focus to wide-scale delivery of programs, organizing the “voice “ of children with arthritis and ensuring progress in arthritis research.
To lead the JAA the Foundation has established the Juvenile Arthritis Alliance Leadership Group. This group will provide input on the Arthritis Foundation’s strategic directions for children with juvenile arthritis and their families and lead the activities of the JA Alliance. The group will include representatives from Board of Directors and committees and councils as well as parents of children or youth with juvenile arthritis, healthcare professionals, researchers, and volunteers with expertise in areas related to the JA Alliance scope of work and who are passionate about improving the quality of life of children and families with juvenile arthritis.
The JAA will focus efforts in the following major areas: Programs and Services, Research, Public Policy and Public Health.
Programs and Services
The JAA will work to increase the numbers of children and families reached by developmentally appropriate quality programs and services. Such programs and services include national and/or regional JA conferences; juvenile arthritis camps; development of evidence based JA programs and chapter level informational workshops, family days that will focus on newly diagnosed children and youth with arthritis, and their families.
Juvenile Arthritis Research
The Arthritis Foundation has been a driving force for the initiation of juvenile arthritis research projects in the United States. It has invested $10.9 million in juvenile arthritis grants and contracts between 1997 and 2006. Between 2002 and 2009 the Arthritis Foundation will have invested another $1.4 million to help the Children’s Arthritis and Rheumatology Research Alliance (CARRA) foster, facilitate, and conduct high quality clinical research in the field of pediatric rheumatology. The JAA will work to increase the investment in research for juvenile arthritis by developing a dedicated program of $2 million or more dollars yearly; and lobby for increased dollars for juvenile arthritis research spent by the National Institutes of Health (NIH) and other Federal research granting agencies. The JAA will facilitate and enhance juvenile arthritis research partnerships between the Arthritis Foundation and CARRA, the NIH, the Centers for Disease Control and Prevention (CDC) and American College of Rheumatologists (ACR).
Key members of Congress in collaboration with the Arthritis Foundation developed the Arthritis Prevention, Control and Cure Act, introduced in 2004. The Foundation is leading the advocacy efforts with other organizations interested in arthritis and rheumatic diseases to ensure the proposed legislation will become U.S. law. This legislation places a high priority on juvenile arthritis through advocacy for increased juvenile arthritis research, CDC and juvenile arthritis epidemiology research, and addressing the shortage of pediatric rheumatologists through a loan repayment program.
To enhance advocacy efforts, the Arthritis Foundation has expanded the annual advocacy summit to include a juvenile arthritis summit. Families are encouraged to bring their school-aged children to learn how they can become effective advocates and to help educate members of Congress that Kids Get Arthritis, Too.
It is also a goal to improve access to quality healthcare for children with juvenile arthritis and increase the number of parents/children and health professionals who are active advocates utilizing advocacy Web tools.
The JAA is dedicated to improving the healthcare system for children and families affected with juvenile arthritis. This will include working to: increase access to pediatric subspecialty care for all U.S. children; increase the number of pediatric rheumatologists by doubling the numbers of pediatric rheumatology fellows in training by 2015; and promote access to pediatric subspecialty care in every state. The JAA will facilitate and enhance juvenile arthritis community partnerships for programs, services and quality care nationwide with groups like the Arthritis Foundation, Centers for Disease Control and Prevention, American Academy of Pediatrics, American College of Rheumatology, Shriner’s hospitals, National Institutes of Health, Bone and Joint Decade.