– Not-for-Profit helping thousands of children with painful under-recognised disease
The Juvenile Arthritis Foundation Australia (JAFA) is delighted to announce that it has been named the Emerging Not-For-Profit of the Year in the 2021 Third Sector Awards. The Third Sector Awards is a national event celebrating and recognising Not-for-Profit best practices across Australia. It is adjudicated by a team of independent judges followed by a public vote. JAFA was established in 2019 with a mission to stop pain and disability in children and adolescents with Juvenile Arthritis. It aims to raise the political and funding profile of this under-recognised and under-resourced disease that affects some 6 to 10,000 children in Australia. Children living with this serious inflammatory autoimmune disease experience significant daily pain and are at high risk of permanent joint deformities and loss of vision if not diagnosed early and treated effectively. They suffer isolation resulting from their physical and social limitations and miss significant school time through illness and the demands of treatment such a joint injections and ongoing injections and infusions of steroids and strong immune-supressing medications. JAFA was started by a group of concerned grandparents and parents to drive research and better services and support for affected children. In less than 2 years the organisation has notched up significant wins including building a strong network of families, establishing peer support for children and leveraging significant Federal Government funding. JAFA co-founder A/Prof Ruth Colagiuri said, “I’m so proud of what has been achieved by our amazing community and this Third Sector Award is welcome recognition of some very hard work by families, supportive healthcare professionals and parliamentarians. Almost all of us are involved because we have a family member affected by this disease and know first had its devastating impact.” Examples of advances made by JAFA for children with juvenile arthritis in the past 2 years include: – Achieving a 100% increase in paediatric rheumatologists’ time in the NSW public sector – Leveraging significant government funds for juvenile arthritis and related research – Launching a national campaign to stop pain and disability in kids with arthritis in Parliament House, Canberra – Addressing social isolation for children by establishing a St George Community grant funded ‘KidsConnect’ program which will link children with JA via secure, monitored online space using digital play tools – Increasing health literacy and knowledge of JA through regular ‘Online Symposia for Parents and Older Children’ featuring Australia’s leading paediatric rheumatologists speaking on critical issues and research developments in JA JAFA Chair Victoria Allen said, “We are well on the way to getting Juvenile Arthritis on the map. We sincerely thank the Third Sector Awards, our families, paediatric rheumatologists, Health Ministers Greg Hunt and Brad Hazzard and everyone who has been part of our journey so far.”
