Friedreich Ataxia Network
The Friedreich Ataxia Network (FAN) is a Queensland FA support group, by FAers, FA families and carers for FAers, FA families and carers.
The purpose of this website is to have an address you can bookmark where we’ll put any and all information that’s useful, necessary or important for FAers.
More immediate information will be posted on our Facebook page which you can access by clicking on the little logo at the bottom right of the page.
FAN was formed by a small group of people living with FA (either themselves or siblings, children etc.) so each of us knows first-hand what it’s like to live with the condition.
FAN is a registered Queensland charity (CH2347) so a receipt will be issued and all donations are fully deductible against tax.
FAN Mission
To foster a positive outlook among FAers and their families, and to assist FAers to achieve their potential.
To compile relevant and timely information and make it readily available.
To promote and support research in any area relating to FA
To promote and support fundraising which will contribute to that research
To assist in clinical trials where appropriate.
To assist in educating professionals through participation in seminars etc.
How can FAN help?
We can:
develop, maintain and moderate a network of FA-affected Queenslanders to support one another and share relevant and timely information.
provide details of specialists in FA and its symptoms.
share the latest updates and status on research underway into FA and the search for treatment and a cure.
provide advice on government help and how to apply
provide advice on managing symptoms and progression of FA.
We share this information via this website, occasional group emails and our Facebook page (which you can access by clicking on the logo at bottom right of this screen).
Membership
FAN membership is open to anyone affected by FA: sufferers, parents, carers and friends. Our role is primarily to develop and maintain a supportive information-sharing network. Hence while membership is open to all, a membership form must be filled. There is no membership fee. You can download the form by clicking here. Fill it in, sign and please send it to:
FAN Secretary
76a Bay Street
Cleveland
QLD 4163
or sign, scan and send it as an email attachment to secretary@fan.asn.au
Management committee
FAN has a Management Committee comprised of five positions: President, Treasurer, Secretary, Social Media Manager and another untitled Committee Member. All are voluntary. Since our AGM in Jan 2022 (reappointed at AGMs in Mar 2023 and Feb 2024) those positions have been held as follows:
President & Secretary, Terry O’Hanlon
terry@fan.asn.au
Treasurer, Brendon Whittaker
brendon@fan.asn.au
Social Media Manager, Jamie-Lee Dwyer
jld@fan.asn.au
Committee Member, Karen Townsend
karen@fan.asn.au
Financials
Friedreich Ataxia Network is a registered charity (CH2347) so we can accept donations from anywhere in Australia and we’ll issue a formal receipt. Any donation above $2 is tax-deductible.
FAN is registered with the Australian Charities and Not-for-profits Commission (ACNC) and submit our updated information to them annually.
Separately, our income and financial report is reported to ATO annually, and that report is then submitted to ACNC. Our information can be found here.
Constitution
To download a copy of FAN’s constitution, click here
Advocacy
If FAN’s input would be relevant and helpful, we’re happy to provide it, on behalf of members, on a number of issues. But where a matter refers to an individual member, it’ll remain private.
From time to time we also advocate on a subject that’s relevant to all our members, possibly even to FAers in general. In those cases we’re happy to show-n-tell what we’ve done.
Cathy McLean RIP
FAN committee member and intrepid traveller (9th February 1969 – 2nd August 2012)
Cathy was eighteen years old when she was diagnosed with cardiomyopathy and was told at that time that she could expect to live for about another twenty years. This diagnosis inspired Cathy to live her life to the fullest. Cathy had a deep love of travel. Her first trip was to Fiji at the age of eighteen and she would eventually visit over 60 countries. Cathy explored these countries with her camera always at her side.
Cathy was working as a travel agent in London when she first started to notice that something wasn’t right with her balance and coordination. At the age of 30, after returning to Australia, Cathy was diagnosed with a rare, degenerative, neurological disorder called Friedreich Ataxia. Far from slowing down, Cathy continued to indulge her passion for travel, conquering locations like Everest Base Camp, Machu Picchu, and The Great Wall, with her now trusty walking stick at her side. On a trip to South America Cathy met and befriended some Australian travel guides. Together, they formed a plan to raise funds towards supporting and raising awareness of Friedreich Ataxia. In 2007, Mick McDonald, Brendan Barbetti, Ryan Heath and Jerry Truman decided to raise funds for Friedreich Ataxia. What resulted was a motorbike ride from London to Vladivostok, across Siberia, raising in excess of $20,000. These men went on to form Compass Expeditions.
Cathy was already active in FAN, the Friedreich Ataxia Network which had been founded by Warren DeWeldon and Moira Sexton. FAN’s aim is to provide information and support to people living with FA, their carers, friends and family.
Cathy was determined to raise awareness about Friedreich Ataxia, to provide a support network for those living with the condition so that information could be shared.
She secured ongoing support from her friends at Compass Expeditions, and pushed for FAN’s incorporation (it’s now a registered charity). Compass Expeditions continue to provide support to FAN and Mick has recently compiled a book which documents the adventures, inspired by Cath, that led to the company being formed in the first place. Click here to find out more (proceeds from sales go to FAN).
That Friedreich Ataxia Network (FAN) continues from strength to strength is testament to Cath’s drive and passion.
To see Cathy’s video click here: “Tell it as it is Cath”