"Working to support people affected by Charcot-Marie-Tooth disease"
CMT United Kingdom E-ComMenT
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It's been particularly hectic since our last email - we've had a Trustee meeting and finalised all kinds of exciting plans for the future. And the most exciting one of these, is the recruitment of our first full time member of staff - a Fundraising Manager, an experienced, skilled individual to help us really bring in the big bucks.
And what do we want all that money for, I hear you cry? Well, the obvious answer is for research, isn't it? More and better research into all aspects of CMT - and not just test-tube stuff, but daily living issues, such as physiotherapy, orthotics, balance etc - can only be a good thing for us all. But research - any kind - is really expensive.
And it isn't all about research, but what extra support can we give you? Some other ideas we have for the future will be (possibly!) outreach workers to come to you, to help with appointments/advocacy/school issues/ benefits etc; better and more publications - in fact, we've just commissioned the third edition of CMT: A Practical Guide, to be launched, with a bit of luck and a fair wind, at the next Conference; more and better (and cheaper) events - for young people, families and everyone else. And of course, more staff in the office (as we need them), to give you a better service when you ring or email us.
Phew! So it's a very exciting time for the organisation at present, and your support (not just financial, although it is essential!!) is vital to us!
So from all the Trustees and myself - thank you for being there!!
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Research
Not all research is necessarily medical, hospital based or whatever - demographical information is just as important.
In conjunction with Professor Mary Reilly and her team at the Centre for Neuromuscular Disease, we've devised a survey about working/retiring issues for people with CMT.
We'd like to know what factors are involved in a decision to leave work entirely, or change careers, and what are the barriers to work and working, what makes working particularly difficult, and is it harder to find a job. That sounds like a long and complex survey, but it really isn't and shouldn't take you more than five/ten minutes.
We would be very grateful if you could complete the survey at www.surveymonkey.com/s/cmt-and-work
This is for people with CMT only, and also only for UK residents.
If you have family members with CMT, who don't currently get this E-ComMenT, could you please share the link with them? This survey is not limited to members/supporters of CMT United Kingdom, but for anyone in the UK with CMT, and the more responses we get, the more useful the results will be.
We can also provide a paper version if anyone would prefer to complete it that way. Just ask for a copy.
Thank you!
(The survey will close at the end of March next year, so plenty of time...!)
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Christmas is a-coming...
Still time to buy Christmas cards...!! Last posting date for all orders will be Monday 16th December.
This is our current design, at £3.00 for a pack of 10
 Order by phone or via the website - www.cmt.org.uk/webshop.php
And don't forget to check out the other goodies we have in the shop - badges, car stickers, pens, mugs, keyturners, pill-pushers - all sorts!
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 If you need a calendar - check out this one, by our friends at Scholarship Press (who design and print our magazine) - with a donation being made to us for each one! www.funfundraisingcalendars.com
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Membership Update Survey
If you haven't returned your survey, posted to you recently, there is still time - there's no time limit, and it's very important that we get as many responses as possible, so that make sure our database is as up to date as possible.
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Join
CMT United Kingdom
So what are the benefits of joining us?
Supporters get:
Three editions of our magazine. ComMenT, per year attached to an email like this one.
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
MEMBERS GET ALL THAT PLUS....
Access to our members only section of the CMT website with its huge library of publications and the Members' Forum
Alert cards for yourself and close family members
Discounted attendance at our Annual Conference - next one on 5th April at the Hilton Hotel, Swindon, Wiltshire.
ComMenT by post (if preferred), and access to 10 year's worth of back-numbers.
And all this for only £22per year, or £27 for families!
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Help us continue our work
If you can make a donation, you can use your Paypal account here
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Social Networking
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Be A Guinea Pig!!
Are there any CMT ers from Manchester area who would like to take part in the medical students exams this year, i.e. be a guinea pig and be poked and prodded whilst aspiring medics try to determine what on earth is up with you?
Dates are Tuesday 14th January and Thursday 16th January at Wythenshawe Hospital.
You can do half day sessions (8.30 - 12.30pm) , afternoon (1pm-5pm) or full days, in any combination. A gratuity of £20 per session will be paid plus travel expenses, refreshments and lunch will be provided. Please let Karin Rodgers know if you are interested and she will pass you contact details onto the relevant person.
Email Karin on karin@cmtuk.org.uk
Thank you
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New Groups
I'm delighted to announce that three new local groups are starting up over the next couple of months - if you live in these areas, and would like to meet others with CMT, please don't hesitate to get in touch - the new Co-ordinators will be delighted to hear from you. Sarah Durose is covering Essex - the SS/CM/RM and IG postcode areas, and will be having her first meeting after Christmas - contact Sarah on 0845 013 2706 or sarah@cmtuk.org.uk Norman Hume is covering Suffolk and Cambridgeshire - the CO/IP and CB areas - contact him on 0845 013 2709 or norman@cmtuk.org.uk Charlotte Blake-O'Brien is covering Herefordshire and Worcestershire - postcode areas WR and HR. Charlotte's telephone number is 0845 013 2707 and her email is charlotte@cmtuk.org.uk The new Central London Group is also doing well, following it's inaugural meeting at the end of September. They are planning a Christmas lunch on 7th December - if anyone would like to go, please contact John Barton on john.barton@cmtuk.org.uk or 0845 013 2704 Don't forget, all our local groups depend on your support so in addition to those aboveAnnette in Cornwall (annette.lj@cmtuk.org.uk),
Lindsay in Somerset (lindsay@cmtuk.org.uk),
Annette in Dorset (annette@cmtuk.org.uk), Terry in Hampshire (terry@cmtuk.org.uk),
Diana in Kent (diana@cmtuk.org.uk), Ana in North London/Herts/Bucks (ana@cmtuk.org.uk),
Sue in Wales (wales@cmtuk.org.uk), Alan in Shropshire (alan.barker@cmtuk.org.uk)
Lisa in West Midlans (lisa@cmtuk.org.uk), Richard in Kirklees and Calderdale (richard.bromley@cmtuk.org.uk),
Sam in North Yorks/Lancs (sam@cmtuk.org.uk), Karin in Manchester(karin@cmtuk.org.uk),
Jeeta in Scotland (jeeta@cmtuk.org.uk) and not forgetting .... Darren in Newcastle (Darren@cmtuk.org.uk) are all waiting to hear from you!!! Phew, what a paragraph - and if you're in any doubt, their details are on the back of ComMenT!! |
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So who saw Casualty on BBC One on Saturday 23rd November, in which they used the acronym "CMT" to stand for "Chronic Micky Takey-itis" for a time-waster in that fictional A&E department? I for one was fuming - it wouldn't have taken two seconds to google those letters and find out that they mean something to us! GRRRR!! However, Richard Ouston, our Chairman, made an immediate official complaint, but if you'd like to complain too (the more the merrier), please go to http://www.bbc.co.uk/complaints/ to register your complaint. It may have been "all in good fun" - but we were not amused!
Regards
Karen
Karen Butcher, CMT United Kingdom
0800 652 6316 or text 07790 789008
email: info@cmtuk.org.uk |
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