Ataxia UK
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Like to meet people with ataxia

Hello my name is Morgan Noble (boy age 17) i have ataxia since I was born and i have yet to find anyone else with ataixa who i know expect from my dad and i am wishing to find people out there who what I have. I live in South Yorkshire so any of you would be willing to meet up that would be great.

16 Replies
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Hi Morgan

Thanks for your post. It is always good to meet new people.

What type of ataxia do you have? Have you thought about going along to a Branch/Support Group of Ataxia UK?

Best wishes

Harriet

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thank u Harriet and i have episodic ataxia type 2

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I, too, have never met anyone with any sort of ataxia and would like to. I seem to have CA induced by autoimmunity. N

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oops forgot to mention that I live in Jerusalem and New York. N

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I'm 17 and I have a rare form of ataxia my name claudia

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hi claudia where do u live because i have only meet people who are over 30 and would be great to meet u

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Hi Morgan

Are you joined up with AtaxiaUK? A very active and supportive organisation with local-ish support groups. There are a number of ataxians out there, some with confirmed diagnosis and some of us still struggling in our 50's to get a definitive diagnosis of what exactly is going on.

I recently found out about my local group and met up for a pub lunch with around 12 others, among the group was another new member so I didn't feel so strange going along. It was nice to be with people like myself struggling with mobility issues like me and some members have speech difficulties too, but it didn't matter and no-one stared at us.

It might be worth investigating what groups and members are living near to you. It is not good to be isolated and even an email/facebook friend makes life a little more bearable.

All the best

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I havent encountered any CA groups in Israel or in NYC. I am supposed to show up in Oxford, UK in mid June. Are here any groups there?

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Have a look on the ataxia.org.uk site there should be a groups section. I know they changed the site recently so if you can't find the local groups bit then get in touch with them and I am sure they will be able to direct you to the nearest group.

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thank you all for replying and I have checked out ataxia UK and found a group thank you very much.

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My son is 17, he has cerebellar ataxia. We stay in Scotland though. But you can look him up on Facebook. His name is Ross Docherty

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Hi Morgan & all you other 17 year olds,

Ataxia UK is setting up a project at the moment, aimed at 16 - 30 year olds! It's going to be mainly using digital media - Facebook, a website specially for 16 - 30's etc. So far there's been a couple of meetings of 16 - 30's to plan it.

The next meeting will be a 'Chill Out' at our Annual Conference on 2 & 3 Oct at the Radisson Blu Hotel Stansted. It may be a long way to come, but Ataxia UK has a bursary scheme to pay half the costs of coming to the Conference (travel & accommodation). The bookings will open at the beginning of June - we have a limited number of bursaries so you would need to apply quickly once the bookings open. If you can't come to the Conference, get in touch with Jonathan Evans jevans@ataxia.org.uk and let him know that you're interested in the 16 - 30's project and he'll keep you in touch with the group.

In addition, we're also having Conferences in Cardiff, Belfast and Glasgow this year. Go to ataxia.ritdns.com/Pages/Eve...

If you haven't joined Ataxia UK, please do. It's free, you'll get our magazine 4 times a year and if you keep an eye on our Facebook page you'll keep up to date with what's going on.

Sue

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There is a group that meets at Springdale Community Centre, Bradford. The next meeting is 23rd May (there isn't one after that until 11th July). Call Dennis on 01274 622116 or Philip 01274 962009 or email

philip.beddard@hotmail.co.uk or if you need it the Ataxia helpline which is 0845 644 0606. I live in Dorset and met them in March as I was staying in Hartlepool and arranged to meet up with them. Good luck with everything. There is a conference at Stanstead in October, perhaps you will make it. Ivan

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Hi Morgan.

I have FA, was diagnosed 5 years ago at 14 and 1/2. I thought I'd never meet anyone young with ataxia, but I did. We are out here!

It would be really great if you came to the Ataxia UK conference 2 & 3 October at the Radisson Blu Hotel Stansted like Sue said. I'm part of the 16-30 group and it would be great to see you there. There will be lots of other young people there for you to meet as well.

I'm on Facebook if you want to chat. facebook.com/ailafigura

Take care :)

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Hello Morgan I to live in South Yorkshire and I have cerebellum Ataxia I to don't know any body with ataxia I was first told in 1997 yes I am a lot older than you ha ; But you could still email me if you want as a ataxia friend in South Yorkshire yes I old man 60 year old

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Hi Hidden and Morgan. I live in South Yorkshire and 60 years old. Was diagnosed early 2017 but had symptoms for several years. If you would like to chat / meet let me know.

There are several people on here from this area, just go to the menu and select 'Near to me' and a list with distances will show.

Hope to hear from you.

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