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The national support group for people with Charcot-Marie-Tooth
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CMT United Kingdom E-ComMenT
Greetings!
Lots of little snippets of news this month. I think I've included everything that I'm supposed to have ....!
I've left the date as June, although I do know it's now July... that's coz it should have been sent last week, but time got away from me! Doesn't it always??! But there will be another E-ComMenT later in July, so the dates will all make sense eventually.
Good luck to our team of runners who will be taking part in the British 10K Run in London on this Saturday coming (9th July) - they've raised in excess of £1,000 so far, and if you're in the vicinity on Saturday morning, maybe you could go along and cheer them on. They'll be in CMT UK running shirts, so they'll be recognisable!!
Karen
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Annual Conference Survey
If you would like to see what people said about our Conferences, you can see the anonymised results here http://svy.mk/N2z0fD
STOP PRESS
Although we haven't signed the contract yet and nothing is set in stone until that's signed, it's looking very likely that next year's Conference and AGM will be at the Holiday Inn, Runcorn - there was considerable call to move away from Coventry, so for our members "up nawth!" - we'll be nearer you next year - on 20th April 2013! If you'd like further information about the hotel, check it out at http://www.holidayinn.com/hotels/us/en/runcorn/wrtrn/hoteldetail - for people who have been members a long while, we have been here before (twice, in fact!). And because it's a bit cheaper, we may be able to reduce the cost a bit for you too. No promises, but you never know.....!For those of you in the tropical south (!), we will be starting a sort of north/south/middle rotation, if we can find somewhere suitable, so don't despair, we'll get closer to you soon - maybe 2014. |
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If you've got a child or young person with CMT who would like to go to see the Paralympic Games, and don't think they can, read on......
We are delighted to announce that family charity The Muscle Help Foundation's 2012 flagship Games Inspired Muscle Dreams programme is now live with the online nomination process officially open! This compelling project offers a once-in-a-lifetime opportunity for children and young people from across the UK with CMT to witness the power and inspiration of the 2012 Paralympic Games.
The charity is keen to ensure that this opportunity reaches as many people with Muscular Dystrophy and CMT as possible, including other registered UK charity's, support groups and communities. For more information go to: http://www.musclehelp.com/news/games-inspired-muscle-dreams-project
Due to the anticipated high response and timelines for specific information to go back to LOCOG with, the closing date for nominations has been set for WED 4th July 2012
For further information, please contact Stacey Williamson on 0131 245 2485 or email gamesinspired@yahoo.co.uk
(Two of our young members have already got places - well done to Kira and Graeme!)
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 Are you young, disabled, and wanting to drive?
Check out the website www.getgoingnow.org and maybe visit one of their roadshows to find out options for you.
Summer 2012 Events
- Saturday 14th July-Donington Park Launch Pad, Derbyshire
- Saturday 28th July-Yorkshire Event Centre, Harrogate
- Saturday 11th August-TRL Wokingham, Berkshire
Get Going is an exciting new program of activities and information for young people and learner drivers with disabilities, including those looking to return to driving after becoming disabled.
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YOUNG PEOPLE'S WEEKEND 2012
Don't forget you can book NOW 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 http://www.cmt.org.uk/ypw-events.php.
If you'd prefer me to send you forms in the post, just email or phone and I can do that, without any problem. We also have a small fund, kindly provided by a member, to assist with travelling expenses - please do ask us about how we might be able to help with this.
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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. So far, we have an Orthopaedic Surgeon, a Rehabilitation Consultant and an Orthotist booked to speak, so it should be a great day!
To book early and reserve your place, click here to download a booking form. Letters will be going out to all Scottish Members in the next month or so.
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Improving Neuromuscular Services
We would like to hear your views and what matters to you on improving NHS South Central's Neuromuscular Services, so if you live in OXFORDSHIRE OR HAMPSHIRE, please read on:
- Meet the specialist teams from Oxford and Southampton
- Learn about forthcoming changes in NHS Commissioning
- Meet the charitable organisations and find out what's new
- Let us know what is important to you
Date: 20th July 2012
Venue: The Forum Room, Newbury College, Monks Lane Campus, Newbury, RG14 7TD (wheelchair accessible)
Time: 2 to 4 pm
RSVP to sue.wilson@scscg.nhs.uk
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Justgiving Pages
If you can spare any support for our wonderful fundraisers, just go to www.justgiving.com/cmt to see all the latest active Justgiving pages for us - new ones are constantly being created all the time.
You can also donate to us via Text, through JustTextGiving Just text CMTK01 to 70070 + the amount of your donation. That will make a donation to our General Fund; for research, text CMTK03, and for the YPW Fund, CMTK02
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 Awareness Month
We still need lots of Case Studies for the press.... if you would like to have your 15 minutes of fame to tell your story, and to help spread awareness of CMT and CMT United Kingdom, please complete the case history form, which we've turned into a small survey to save downloading a paper form and posting/emailing it back!
Go to http://www.surveymonkey.com/s/NS8GSXS
Many thanks - it really does make a huge difference if the press have a local story.
FLYERS - We've decided NOT to send you all a poster or flyers to distribute this year, to save money on postage etc, but you can download them from the website in due course. (don't bother looking yet, I haven't uploaded them!! I'll let you know next time!)
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 SUBSCRIPTIONS
Please help us keep running smoothly by ensuring that your membership renewal is returned to us promptly - saving us time and money in remind you. Make it easier by paying by direct debit- download a Direct Debit Mandate here.
By the way, if you're sending monies to us for more than one item, or for a donation in addition to your subscriptions, you need only send one cheque - we will ensure that the monies are split the right ways! No need to waste your cheques!
And if you move house, or change email address, PLEASE make sure you tell us promptly, so that we can update our database.
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DONATIONS don't have to just be in money, you know! Have you thought about sending in any unused Tesco vouchers (providing they haven't expired)? We can exchange them for raffle prizes or other goodies to use in fundraising (or YPW) events.
Don't forget we also collect used postage stamps (trimmed, please), inkjet/laser cartridges and old mobile phones. We can send you bags for cartridges and phones - just ask!
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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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| I did promise news of a fundraising extravaganza in the last edition of E-ComMenT, didn't I? Well, I'm going to leave you waiting a bit longer, whilst we finalise details, but all I'm saying now is, start saving the pennies and mark Saturday 7th September 2013 in your diaries - especially if you live within easy access of Bournemouth!! More news soon!
Hope the weather isn't getting you down too much. So much for summer....!
Regards
Karen
Karen Butcher, CMT United Kingdom
0800 652 6316 |
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