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The national support group for people with Charcot-Marie-Tooth
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CMT United Kingdom E-ComMenT
Greetings!
Another E-ComMenT hits your inbox! The main message in this one is - if you're intending to come to the Convention, please please PLEASE don't be late with your booking! There is such a lot to organise that I really need as much time as possible!!
But at least it looks as though I won't be having my surgery before the Convention now, for one reason and another, so that's a relief - I suppose!!
Karen |
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International Convention
15th-17th April 2011
We're enforcing a VERY strict deadline for booking this time, folks..... if your booking form isn't on my desk by Friday, 25th March, then you can't come!!
You have been warned!! |
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And a plea from Oz!
To the members of CMT United Kingdom:
My name is Tracey Lee and I come from Tarrawanna, NSW, Australia. I came to England some 19 years ago for the International Convention in 1992.
I am looking forward to once again coming to the UK for this next Convention to meet other people, and share knowledge about CMT, and to assist each other by sharing our experiences.
At the end of the Convention, on 17th April, I would like to remain in England for approximately 2 weeks, leaving England on 30th April, and would greatly appreciate it if any family could offer me accommodation for the two weeks, as I would love to see more of England.
I have other disabilities, including MS and Alopecia, and would like to see some places that a friend has told me about.
I would like to thank the UK members for the newsletter, where I asked if there were other people with CMT and MS. I felt that for a long time I was the only person with both conditions, and would very much like to meet any other person with the same as me.
My life has not been rosy because of the cards I have been dealt.
Bye for now from Oz and I hope to see you all at the Convention.
Regards
Tracey
(if you would like to contact Tracey, please contact Karen at the usual address, and I'll send you her details) |
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Don't forget our wonderful CMT Kids have challenged themselves to canoe down Thirlmere, in the Lake District, and cycle back - all assisted by the great folk at the Calvert Trust. This event is happening on 7th May. The scary part is that they're hoping to raise £10,000 - and they're an awful long way off that target yet. If you can help, please go to www.justgiving.com/CMTKidsChallenge
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Some of the mob, on the special "disabled friendly" bikes |
Donations can also be accepted by post or by phone to the usual office address. |
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Dinner with Marco-Pierre White
One of our members, Rebecca Brooks, has been busy raising awareness by getting celebrities to sign one of our CMT T-shirts.... one of the first was Marco Pierre White, celebrity Chef. He was greatly impressed with Rebecca and Georgia (her daughter) and is anxious to help us raise funds!
He is hosting a Celebrity Dinner at his Restaurant, The Chequers Inn in Uckfield, Sussex in early June (date to be confirmed). Tickets are strictly limited and will be £60 per person, to include a three course meal and a drink, a celebrity "meet and greet" and a Grand Auction.
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Georgia and Marco |
If you would like to attend, please email Karen as soon as possible, or "inbox" Rebecca Brooks through Facebook. There are only a very limited number of places left - we cannot guarantee a spot at the moment, but will try to allocate them as fairly as possible!! |
Thanks for your generosity
Lisa would like to thank all of you who made donations in memory of her husband, John. The total stands at over £900. The funds are going to be used for an event for the CMT Kids - probably next year now - and will probably involve John's other "love" - canal boats. |
Dear fellow CMTer's
The long awaited CMT survey has been launched today and I invite you to take part!! This survey can be completed either online by following the link below or on paper (for a paper copy, contact me on the email below)
http://www.smart-survey.co.uk/v.asp?i=32726frowi
This survey is open to all those who have CMT across the world, so if you have friends or family that can take part please do encourage them to take part. The survey will be live until 7th June 2011, however, if I reach the desired number of participants before that I will close the survey, so I encourage you all to take part as soon as you can. The survey is anonymous, so people will not be required to give any of their personal details at all.
You may find some of the questions slightly odd - but please be aware these questions are validated questions from reputable questionnaires, and have been ethically approved for use in this survey. There are reasons for them all!
Thank you all very much
Krishna Talsania
krishna_talsania@hotmail.com |
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Membership of CMT United Kingdom
So what are the benefits of membership?
Access to our members only section of the CMT website with its huge library of publications
Three editions of our full colour magazine. ComMenT, per year
Monthly e-ComMenT's with lots of extra news.
Local groups around the country
Local contacts - there are almost 30 members around the country who are happy to talk to you by phone or by email - find the list on the website in the Member's Area
Discounted attendance at our fantastic Annual Conference - next one in April 2011 at the Hilton Hotel, Coventry.
Access to our freephone helpline !
And all this for only £20 per year, or £25 for families! (prices for renewals from 1st October 2010)
Join at www.cmt.org.uk - membership is free for the first year for new members! |
Update Survey
It is STILL not too late to update your details with us using this survey form, if you haven't already done so. It's really important that we have up to date information on you all!
Thank you!
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It's a bit short and sweet, this edition - lots to do!!! The next one won't be until after the Convention, when we can perhaps give you a quick snapshot of the goings on!!! Don't forget, if you want to come, there's just over a week left before the deadline for booking!! Regards
Karen
Karen Butcher, CMT United Kingdom
0800 652 6316 |
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