Ataxia UK will be holding its annual conference on Saturday 5th October 2013 at the Radisson Hotel at Manchester Airport. I was wondering about organising a get together of folk who use HealthUnlocked on the Friday evening for us to socialise but also to let others know about the site and encourage them to join if they would like to. It would be really helpful if you could give me your feedback on this idea and, although I know it is a wee bit early to ask, whether you think you would be able to come.
Best Wishes
Harriet
Written by
HarryB
Administrator
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Great idea, although I live in the US, so will not be there! The National Ataxia Foundation in holding a conference in March in Detroit, Michigan, which I'm going to attend! I live in the State of Michigan, and the City of Detroit in only about an hour drive from the town I live in. I'm excited about attending the conference, as this will be the first time for me! It is held in different States each year. I look forward to finally meeting others with ataxia, as I've never personally met anyone with ataxia before. Also, my neurologist and speech therapist are speaking at it, as well as other medical proffessionals I'd like to hear. If I lived in the UK, I'd definitely attend the conference and would love to meet others and socialize! ;o)
I have been to the NAF conferences twice, Chicago in 2010 and LA in 2011. There are three people going from the UK this year. I assure you, you will have an amazing time!
- I have to say - as an old technophobe - that I find the
HealthUnlocked site is so easy to navigate that I feel I am in a "chat room" (whatever that is!!) and has some really helpful stuff. And I think it would be good to exchange views on its style and content.
I certainly intend to be at the Conference in October - Insh'Allah - [if that's not too non-p.c these days... - as I'm sure you will know - it means God Willing.....but I love the sound of the arabic version... ]
Hi, sounds like a really good idea, but I doubt if I will be able to come as I live in S of France. Do you know of any assoc in France that meet up. I can only find AFAF.
Hi wibblywobbly, There are 2 associations in France, AFAF for people with FA; and for CA there's L’Association Connaître les Syndromes Cérébelleux, which you can find at: csc.asso.fr/. I know people from both as they are members of euro-Ataxia. Neither have many resources, but both hold meetings from time to time. Best wishes, Sue
I'm interested in attending... but I have absolutely no idea what to expect. I've never been to anything like this before, and I've never even met someone else with ataxia (in real life!). Do you have to know other people that are going - is it really awkward to go alone?
You do not need to know anyone and while I understand how daunting it will be to attend on your own, I assure you as soon as you get there any fear will soon disappear. It is an extremely friendly and sociable weekend and there is always someone to talk to.
I think it is comforting to know that everyone in the room has the same problems and I can't tell you how refreshing it is to have a conversation with someone you don't know about ataxia without first having to explain what it is.
I will definitely be arranging to have a 'HealthUnlocked' gathering on the Friday evening and I hope to be able to join forces with Virtualataxia which is another online support group run by two lovely people who both have ataxia. This would be a great way to meet others.
Please feel free to ask any questions you have. I remember my first conference and how nervous I was. I have been countless times since so I must've enjoyed it! If you do decide to come, I would be very happy to meet you at the hotel when you arrive.
Thanks Harriet, as I've never attended a conference before. Looking forward to it! Like you Wildone, I was diagnosed with ataxia 10 years ago, and have never met anyone face to face with ataxia. In fact, until I was diagnosed, I had never even heard of ataxia! I live in the US and am going to the National Ataxia Foundation (NAF) conference being held in Detroit, Michigan this year. I'm very excited to meet others with ataxia, and hope to meet the 3 people from the UK that Harriet said were coming! I encourage you to attend the conference in Manchester if you can Wildone! ;o)
We will be coming to the confrerence yes I think it is a great idea it gives people another chance to meet and diccuss tips and other experiencesand above the support of other ataxians.
Hi Harriet I would love to attend the conference in October, I am on the waiting list for the Regional conference which is on the 15th June, in Basingstoke. Unfortunately I wasn't quick enough to apply for that and don't wish to miss the one in October .
The annual conference this year is at the Raddisson Hotel at Manchester airport on Saturday 5th October. There will also be things going on on the Friday evening, for example a Health Unlocked get-together. Booking for this opens in the middle of June. I will put a reminder on here.
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