We are FAN, a support- and information-sharing network for anyone impacted by Friedreich Ataxia (FA) FAers, family, carers and friends. We’re based in Queensland and some of the information here is relevant only to QLD. But the information about FA is relevant to everyone and we’re happy for discussion and input from anyone affected by FA no matter where you live. Everyone’s welcome!
The first time most people become aware of FA is when they or someone close to them is diagnosed with it. It’s a pretty awful diagnosis as FA is a pretty awful disease but the prognosis isn’t as bleak as many think it is. What most people hear at the time of diagnosis FA is a progressive condition and there’s 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.
Understanding that is the first step to developing your positive mindset. The next is building or maintaining strong social connections. Many FAers avoid meeting others with the condition for fear of comparison, but comparison would be neither flattering nor unflattering. It’s impossible. Every case of FA is different: different number of GAA genetic repeats, different severity, different rate of progression. Avoiding meeting others with FA can begin a downward spiral which leads to isolation, loneliness, anxiety and mental problems. On the other hand, while every individual case of FA is different, there’s much we FAers can share with, and learn from one another.
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. It’s 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 you’ll find whatever we’ve 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 there’s information you can’t find or you’d like to know more about any specific topic, get in contact and let us know.
If you live in Queensland or northern New South Wales we’d love for you to join FAN. Information’s important but there’s 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 you’ll 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 there’s an improvement you’d like to see on this website, something you’d like more information on, please let us know. There’s 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 that’s permanent and needs to be easily findable will be posted on this website. Stuff that’s more opinion- or discussion-based can be popped onto Facebook. It’s a closed group which means you need to be accepted to join and once joined, it’ll automatically notify you of anything new posted there. If you comment on something that someone posts, it’ll email you any subsequent comments related to that post.