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The national support group for people with Charcot-Marie-Tooth
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CMT United Kingdom E-ComMenT
Greetings!
Thank you so much to everyone who has sent their Grand Prize Draw tickets back already! If you can sell any more tickets, please let us know, and we can send you some more sheets. Conversely, if you would prefer NOT to receive tickets in the future, please let us know and we can make a note on our database.
Karen |
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Annual Conference/AGM
Thanks also to everyone who has already booked for the Conference on 21st April at the Hilton Coventry - don't forget, the deadline for booking is 6th April! If you haven't received the forms in the post, it's because we're expecting you to download them from the website!!! Go to www.cmt.org.uk/annual-conference.php to get them!
See you there!
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 Young People's Events
We have twelve young people and helpers booked for the amazing trip on Tenacious (pictured here) on Saturday 28th July. There is STILL time (just) to book if you contact me like yesterday.....
If you're a bit daunted by the thought of sailing this thing - and maybe having to scale the masts - don't be - this isn't a usual part of a Day Sailing Trip (there isn't time to do the necessary safety training) - so fear not! You can find out a rough idea of what the day entails here http://www.jst.org.uk/day-sails.aspx - sounds like mostly eating, if you ask me!!
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YOUNG PEOPLE'S WEEKEND 2012
And don't forget you can book already for the next YPW event at Bendrigg Lodge, Kendal on 26th-29th October. Email Karin at karin@cmtuk.org.uk for further information. The lower age limit is 12 and the cost will be £45. You can download forms and information at www.cmt.org.uk/young_people_weekend.php
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Scottish Conference
For everyone north of the border (and south if you want to!), we'll be hosting a Regional Conference in Scotland - at the Hilton Hotel, Strathclyde on Saturday 15th September. Speakers and all the details are still being worked on, but mark it in your diary!
And if you would like to talk to, or meet up with, our Trustees in Scotland, email either Richard or Jeeta Ouston (richard@cmtuk.org.uk or jeeta@cmtuk.org.uk) and they'll be happy to meet you, or have a natter or whatever! |
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RESEARCH
Rehab consultant Margaret Phillips from Derby is the lead investigator for this project about Fatigue - if you email Karen.kirkland@nottingham.ac.uk with your name, address and age, she'll arrange to send you the questionnaires.
The study is only open to people from the UK, unfortunately
Talking of Research, as you know we are half-way through funding our PhD Student, Amelie Pandraud, who is working on an important project into CMT Type 1a with Mary Reilly at the Centre for Neuromuscular Disease. We have paid 2 of the three payments (approx £10,000 each payment), but if you would like to contribute, you can send any donations to the usual address. We have a fairly significant sum of money stashed in the Research fund, so we are now starting to actively investigate how we can best use the remainder of the funds. It's not enough for a major drug trial - the Vitamin C trial in the UK cost around £225,000 (!) but it's enough for a piece of essential equipment, or maybe another part-funded PhD student. We shall let you know what happens with your money. |
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CMT: A Practical Guide
We're going to have a major review of our indispensable guide to living and coping with CMT during this year - can you believe, it's been six years since it was published? Where does the time go?
However, this is going to be an EXPENSIVE PROJECT!! If anyone would like to make a donation to help with the cost, or has experience in fundraising and can help us find suitable funding (perhaps you're a member of Lions, Rotary or similar), or your company has a fundraising or grant scheme we can access, PLEASE contact us at the usual address. We can't give the go-ahead to begin this project until we've got some specific funding in place.
Thank you - we really do appreciate every penny! |
 Last but definitely NOT least!
Awareness Month will be September as before - with a bit of luck, in collaboration with our friends from around the world as last year! This is the slightly amended logo for 2012 - it seemed to go down well last year, so we thought we'd stick with it!
We will need your help, as always. Local (and national) press are far more interested if they can talk to a local person about CMT - if you are happy to talk to the press, share your story (and picture) with them, PLEASE get in touch with me NOW and I'll pass your details onto Paula Hunter, who will be co-ordinating our PR efforts for us. |
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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 on 21st April 2012 at the Hilton Hotel, Coventry.
And all this for only £20 per year, or £25 for families!
Join at www.cmt.org.uk - membership is free for the first year for new members! |
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Re-reading this newsletter, I'm sorry, it seems to be book this (money), donate here (more money!) all the way through. But that's the reality of running a charity, we are totally dependent on your generosity! Whilst it appears on the surface that we've got plenty of money stashed away, it's either restricted and must be used for what it was donated for (as in the case of Research or Young People's events), or it's necessary reserves that we might need to survive on, if donations suddenly disappeared! I'm sure that wouldn't happen, but you never know and we have a duty to be prudent!
Regards
Karen
Karen Butcher, CMT United Kingdom
0800 652 6316 |
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