How Can You Help?
There are many ways you can help JAFA to help children and young people with arthritis. Everyone can do something.
JAFA needs funds to support medical research and infrastructure and run its programs so we are always very grateful for donations. But there are other ways of helping. For example, talking to others about juvenile arthritis helps spread awareness and anyone can write to their local Member of Parliament to advocate for better services so please read on…
Donating
JAFA is a registered charity with deductible gift recipient status. For enquiries about how to donate, please contact Andrew Harrison, JAFA’s Director Responsible for Finance at: andrew.harrison@jafa.org.au.
Research into juvenile arthritis in Australia is staggeringly under-resourced so research funding is high on JAFA’s list of priorities and targets. JAFA aims to raise $1,000,000 per year to assist Australian paediatric rheumatology researchers to improve the diagnosis and treatment of juvenile arthritis and work towards a means of preventing and curing juvenile arthritis. For enquiries about sponsorship of specific research projects please contact Stephen Colagiuri, JAFA’s Director Responsible for Research at: stephen.colagiuri@jafa.org.au.
Other items JAFA needs to fund include awareness and programs for children and young people with juvenile arthritis and their families. For example:
$3,000 pays for an online Symposium for parents to learn about juvenile arthritis
$20,000 pays for a national public awareness media campaign
Fundraising
Every dollar helps. After all, if 10 people raise $1,000 each that’s $10,000. We’d like JAFA’s fundraising to be coordinated so, if you are thinking of raising money for JAFA, please contact ruth.colagiuri@jafa.org.au and we’ll contact you to see how we can help.
Grandpower
JAFA thinks there are lots of grandparents out there who have excellent skills and maybe some spare time to help build JAFA into an effective organisation. JAFA would welcome grandparents with skills and experience in business administration (both public and private), HR, public policy, health and education policy or practice, media, journalism, advertising, public relations, ICT, web design, academia, research, finance / accounting, public policy, government and/or government bureaucracies, advocacy, law, medicine - to name a few.
JAFA is really keen to trial Grandpower so please let the grandparents in your life know that they can register their interest or obtain further information by contacting Ruth Colagiuri, JAFA’s Director Responsible for Policy & Strategy at: ruth.colagiuri@jafa.org.au .
Raising Awareness
Juvenile arthritis is one of the commonest serious chronic childhood diseases yet it is grossly under-recognised and under-funded. Three things you can do to raise awareness of juvenile arthritis are:
Talk about it Just talking about juvenile arthritis to friends, neighbours and work colleagues helps spread awareness.
Ask about it Ask your GP about juvenile arthritis. Ask about it on talk back radio eg ask why awareness is so low and why we don’t have better services for the 6,000 plus kids in Australia who have juvenile arthritis.
Write about it Write about juvenile arthritis on social media: Facebook, Twitter, Instagram, or write a blog about it. Write a short story about your child’s journey and see if you can get it published in a magazine, newsletter or your local paper.
lobbying
Kids with arthritis deserve better. Research shows that services for juvenile arthritis in Australia fall well below standards in other equally developed economies. We can change this by lobbying our governments and individual politicians. We are not asking for bells and whistles……just affordable, comprehensive, multidisciplinary services that are appropriate to the seriousness and impact of the disease and within reasonable geographic reach of the children who need them. Public health services such as hospitals and outpatients clinics are funded from our taxes. The Federal Governments administers the funding for Medicare and drugs directly, and allocates money for hospital and community health services to the State and Territory Governments so:
Write to the Federal Health Minister If you want better access to biologics
Write to the Health Minister in your State or Territory If you want better access to paediatric rheumatology services (doctors, nurses, physios, psychologists, pain management).