Caling anyone in Dudley or the surrounding area who has, or is affected by ataxia in any way or who are interested in supporting Ataxia UK. Through Ataxia UK, I have started a Local Support Group and we would love to reach out to more of you. Please come along to - The Village Hotel Dudley, Castlegate Park, Birmingham Road, DY1 4TB at 2pm on Saturday 23rd April. We are a very informal, happy bunch who's aim is to support eachother and raise awareness of Ataxia.
This is only our second meeting, come along and be part of our beginning.
Mel x
Written by
memielou
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My step daughter has very recently been diagnosed with FA, we are in the Dudley area and my wife and I would love to come along to one of the groups.... When is the next meeting going to be?
Our next meeting is this Saturday 6th August, 2pm at The Village Hotel It would be great if you and your family can join us, if it's not too short notice? otherwise the September meeting is scheduled for Saturday 10th. We gather in the reception area, lefthand side, you can't miss us but someone will be outside holding small Ataxia poster, make yourself known to them and they will guide you to us.
Thanks for the quick response.... Unfortunately my wife is at work this Saturday and won't be able to get the time off but we will definitely be able to come along in September.
We weren't sure whether we should bring Meg along first time or come and meet people first? She's quite quiet and we get the impression that she's going to take some time to get used to the idea of how this it will affect her, she's just turned 14 a few weeks ago.... Are there any other kids who come along?
Meg can come too if she wants to, we would definately make her welcome and although the youngest member of our group is 22 she was diagnosed with Fredreichs Ataxia at the age of 12. we have lad aged 24who was diagnosed with Spino Cerabella Ataxia at 14 and me with SCA too, diagnosed at 25. The rest are family, friends and supporters of us. The decision is yours. We are only small at the moment, you and your family would increase our numbers to 12, I onley started the group in March. but the fact that people keep coming back must mean that we are doing something right?
You could always pop along yourself on Saturday, if you have a few minutes spare to 'check us out', you don't have to stop. then you can see if we are what you're looking for?
Harriet gave the best advice in reply to your first post on here, I can't reccomend Ataxia UK enough they are wonderful, full of information, I wouldn't be as positive as I am today if it wasn't for thier support and advice.
Mel
Ok thanks Mel, I think I'm going to speak to Meg and see what she wants to do but I'll message you and let you know either way. Thanks again, speak soon
Just a short note to remind you that the next meeting of the Support Group is Saturday 10th September, 2pm at Village Hotel. Your wife and yourself would be most welcome to join us, and Meg too, of course, if she wants to?
Aww... Guyb, such a shame that you're not closer to us, you would be very welcome. You shouldn't feel isolated, maybe if you search though the Branches and Support Groups on ataxia.org.uk you might be able to find one closer to you. I believe that there is also a Virtual Group that meets though the internet? check the website or ring the helpline on 0845 644 0606, I'm sure they will help.
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Have you joined an Ataxia UK branch or a support group in your area?If there isn't one would you like to help me set one up?
Ataxia to Atrophy
Autosomal Recessive Cerebellar Ataxia type 8 (ARCA8)
