Useful links & information sources

One of the most helpful/important things we can do as FAers, carers and families is network, communicate with others in similar circumstances. Seek and give help and support.

We (FAN) have a page on Facebook where members can post questions for input from other members. You can access it by clicking here.

This is where we post the latest info we have. If you’re a FAN member, you should join, click “Like” and “Subscribe”. That way, anytime someone posts something, it’ll automatically be emailed to you (if you post a reply or comment, you’ll automatically be emailed if others do too).

We welcome new members, FAers, family and friends, but it remains a closed FB group so we can control who’s a member and avoid spam. If you ask to join, FB sends an email to the admins of the group, any of who can approve you. So, if we wouldn’t know who you are, send us an email directly so we know your connection to the group.

There are a number of other Facebook groups with a similar focus. Here are the ones I’m aware of (If you know of others, email me via the address bottom right of this page and let me know):

FAersOnly: To provide emotional and information support for FA sufferers (intentionally restricted, not family, carers or friends).

Live life to the fullest (closed group, similar to group above): This group is only for people who have FA. Chat, talk, share concerns, vent etc. Have a good time and make new friends.

FAPG: To provide emotional support and share information among FA parents, friends and carers.

FA diets & workouts: Information sharing.

Able Adventurer: The Able Adventurer will provide people who have disabilities of one kind or another, others who use wheelchairs or mobility aids to get around in the everyday life, and their families and carers, with information that will enable them to better plan their travel to other places and thus better enjoy their subsequent adventures.

FA Association of Victoria Support Group (one of the most active FB groups in Australia. Membership isn’t limited to Victorians): “If you have Friedreich Ataxia, or know somebody who does, join our friendly little group. This group is a way to connect with others out there living with FA and know that you are NOT alone!” The FAAV also have a website:click here.

VirtualAtaxia: An organisation coordinated in the UK that organises twice-weekly chat sessions for FAers, family, friends and carers.

There are also many FA-related websites that are worth checking out:

BabelFAmily: A European group, coordinated in Italy, that provides multilingual information about all things FA-related.

FA Patient Registry: Maintained by FARA (US), this is a single registry that ensures a trial cohort can be put together when needed. Make sure anyone you know with FA is registered.

FARA(A): Australian organisation that raises and dispenses funds for research to find treatments & a cure for FA.

FARA (US): US organisation that raises and dispenses funds for research to find treatments & a cure for FA. This site is also packed with information about all the research projects and trials underway worldwide. Most FA groups throughout the world are connected with FARA in one way or another so this is a great starting point when anyone is looking for any FA-related info.

MDA: The Muscular Dystrophy Association have more members and have been organised longer than our FA communities so they can be an invaluable source of help, in particular in relation to dealing with government and disability services.

These are the ones I’m aware of. If you’ve found others that everyone should be aware of, let me know and I’ll add them to this list.