We are FAN, a support- and information-sharing network for anyone impacted by Friedreich Ataxia (FA) FAers, family, carers and friends. Were based in Queensland and much of the information here (for example the stuff about state government assistance) is relevant only to QLD. But the information about FA is relevant to everyone and we welcome discussion and input from anyone affected by FA no matter where you live. Everyones welcome!
The first time most people are aware of FA is when they or someone close to them is diagnosed with it. Its a pretty awful diagnosis as FA is a pretty awful disease, but what most people hear at the time of diagnosis FA is a progressive condition and theres neither treatment nor cure is simply not true.
The truth is far more hopeful. With regular exercise and a positive mindset it is possible to retard progression significantly. Research is powering forward and promising results are being found toward both treatments and a cure.
FA is a vanishingly rare condition. Most doctors have heard of it only in their training. Almost none has encountered it in their practice and they repeat only what they learned some time ago. It tends to be we, who know FA from our own lived experience, that learn news first. Its up to us to share what we know and help one another deal with FA.
There are many ways you can be part of our network. Explore this site and youll find whatever weve been able to find out so far. Read the blogs and gain insight into the perspectives of those affected by FA. Leave feedback on any of those blogs to let us know if what we write has relevance and is helpful to you.
If you live in Queensland or northern New South Wales wed love for you to join FAN. Informations important but theres even more to be gained from meeting in real life. We organise social get-togethers and relevant presentations periodically in either Brisbane or Gold Coast. If you join, your email address will be in our database and youll be kept up to date whenever we send out any notification.
No matter where you live, we invite you to join our Facebook Group. You can interact with others in the FA community and be alerted whenever we have anything new to share.
If theres an improvement youd like to see on this website, something youd like more information on, please let us know. Theres a contact email address at the bottom of the page. All feedback is welcome!
Raising funds for research to find treatments and a cure for FA is the domain of FARA (fara.org.au). FAN is concerned with how each of us should make the most of our lives in the meantime.
Information thats permanent and needs to be easily findable will be posted on this website. Stuff thats more opinion- or discussion-based can be popped ontoFacebook. Its a closed group which means you need to be accepted to join and once joined, itll automatically notify you of anything new posted there. If you comment on something that someone posts, itll email you any subsequent comments by anyone else related to that post.