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The national support group for people with Charcot-Marie-Tooth  |
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CMT United Kingdom E-ComMenT
Greetings!
Hope you're all surviving the winter so far - it's just a bit wet and windy down in Bournemouth at the moment - especially by the office, where the wind whistles along the row of shops like nobodies business!
Lots and lots of interesting bits and pieces in the E-newsletter this time!
Thanks to everyone who are returning their Grand Prize Draw Tickets (particularly to those who are adding an extra bit on - we do appreciate it) and thanks also to those booking for the convention - we're looking forward to seeing you there. I'll be buzzing around in my scooter - more surgery planned for my poor foot in March! What fun!!
Karen |
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International  Convention
15th-17th April 2011
Booking forms and Grand Prize Draw tickets should be with you by now! If you have ANY queries about anything, please just ring us in the office and we can advise you. For instance, we've had a couple of queries about attending as a day delegate for Friday and Sunday, as well as for Saturday - yes, you can certainly do this... same day delegate rate as for Saturday. I did amend some of the forms, so you may have that option, or you may not!!!! Likewise, if you want a twin room, rather than a double - not a problem, just write it in the "comments" box on the form.
We want this event to be a really successful one, so we're happy to be flexible to help you (within reason!) |
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Next edition of ComMenT
In the next issue of comment we will be focusing on 'hands' as we often talk about feet and mobility and so I thought it was about time we addressed hands! We are looking for CMTers to tell us their hand stories. Do you suffer with weakness in your hands, but more importantly, how do you overcome it? Do you have an exercise that helps or a nifty gadget? We'd love to hear your stories. Please contact kate@cmtuk.org.uk. Please note, we will require a photograph and to print your name in the magazine. |
'Kidz in the Middle'
Thursday, 10th March 2011 at the Jaguar Exhibition Hall, Ricoh Arena, Coventry
One of three of the largest FREE UK exhibitions totally dedicated to children and young adults with disabilities and special needs, their families, carers and the professionals who support them.
Thank you for your interest in our Kidz events. You can download your tickets from here. Although the tickets are not compulsory they do save time on registration, if completed beforehand. They also include the timetable of all the FREE seminars taking place throughout the day, the exhibitors list and details of the fun and features running alongside the event so can help you plan your day.
Attending the 'Kidz' events is more crucial now than ever before. The Government continues to commit to the investment of £340 million in equipment and wheelchair services, and has recently announced that they will be providing local authorities with £800 million to help fund short breaks for families with disabled children.
As funding continues to be a major concern, the 'Kidz Team' have taken a proactive approach and introduced 'The Funding Point' offering advice and information on alternative funding streams for equipment and much more at all our Kidz events.
(There is also information on "Kidz Up North" and "Kidz South" on the ticket leaflet too, if you're too far from Coventry). |
Rare Disease Day 2011 - Get Involved!
We need your help to raise awareness!
As you may know it is Rare Disease Day on the 28th February and one of the main aims is to raise awareness of rare diseases - obviously a key group that we need to raise awareness amongst is politicians. If you would like a template letter to send to your Member of Parliament, Welsh Assembly Member, Scottish or Northern Ireland Parliament member, please email Karen and she will forward the original email she received from Rare Disease UK, which has all the relevant links to these letters. Rare Disease UK would be interested in hearing whether you get a response from your elected representatives so that they can follow it up if needs be.
The contact for Rare Disease UK is Stephen Nutt, email:
stephen@raredisease.org.uk or phone 020 7704 3141. |
CMT Kids Challenge 2011
 Don't forget the CMT Kids Challenge is happening in May 2011 at the Calvert Trust in the Lake District. If you're over 12, and ready and willing (and fit enough) to give yourself a real challenge, canoeing and cycling (using hand or recumbant trikes, if you've never cycled, like the ones in the picture) around/along Thirlmere in the Lakes, please contact Karin Rodgers about coming along (karin@cmtuk.org.uk). Places are limited, so don't be shy!! We can provide sponsor forms if you want them, or you can direct your donors to www.justgiving.com/CMTKidsChallenge for online donations. You MUST be prepared to fully take part in the entire challenge, AND actively raise as much as possible - a target of £10,000 has been set which is only £500 if there are 20 participants!! That's not bad, is it? Hopefully, we'll have posters available soon for you too, to put in your school, place of work, or anywhere else you can think of.
However, if this entire Challenge is too much for you at present, there will be another YP Weekend in October, watch this space for further information later in the year.
And if you'd like to go along, but might struggle with the cost of travelling, please let Karen know, as we have just received a donation for the Young People's activities, specifically earmarked for assistance for young people who would otherwise struggle to attend.
 - for the CMT Kids page!! |
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South West NeuroMuscular Network Information Day
If you're within the counties of Cornwall, Devon, Dorset, Wiltshire or Somerset, and can travel to the Cornwall/Devon border area, you might find this information day useful - it's aimed at everyone with a neuromuscular condition, and covers a wide range of topics, from aids and adaptations, to benefits and how to make your voice heard with regards to services. It's on 15th March - you can download an invite, agenda and directions from here. |
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Everest and Us
We've now heard from the guys who are climbing to Everest Base Camp in aid of our Research Fund, and I'm pleased to say that they've made it!! You can read more about their amazing journey so far on the CMT United Kingdom Facebook page - http://on.fb.me/hd0Nj8 and the Justgiving page is here - www.justgiving.com/everestandus |
Research
If you have CMT type 1a and would be interested in completing a very thought-provoking questionnaire about a potential new treatment for this, could you email me, please at info@cmtuk.org.uk and I'll put you in touch with the researcher. You must be in the UK. There are no trials to be involved in - it's purely about how much effort you'd be prepared to take for a treatment, and what you'd expect to gain! It is very interesting stuff, believe me!! |
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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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An action packed E-ComMenT this month! Hope you enjoy it, and if you can support our great fundraisers, that'll be wonderful - but we do appreciate times are tough, specially, if you're like me and use your car for everything, with the cost of petrol!!!
Regards
Karen
Karen Butcher, CMT United Kingdom
0800 652 6316 |
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