"Working to support people affected by Charcot-Marie-Tooth disease"
CMT United Kingdom E-ComMenT
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Greetings!
June has been a VERY busy month, both personally and for the organisation!
I've just got back from Antwerp, where I attended the Biennal CMT Scientific Consortium meeting at the end of the month - the usual three day conference, funded by CMTA, of researchers from all over the world. It's an amazing collection of people who are absolutely dedicated to finding a solution to CMT eventually.
What was especially exciting this time is that we had Support Groups meeting as well, and representatives from CMT France, CMT RETE and AICMT (both from Italy), CMTA, CMT Belgium, the Netherlands, CMT Czech Republic and CMTA Australia were all there. It was a wonderful opportunity to put faces to names, and to talk through all the myriad of issues that face us all - starting with awareness ....!
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Annual Conference
Planning is already underway for next year's Annual Conference which will at the Hilton Swindon (by junction 16 of the M4) on Saturday 5th April. Speakers haven't been confirmed, but ideas so far are an orthopaedic surgeon as lead speaker, and workshops on physiotherapy, pain, and hopefully (if she's happy to do it again) a neurology Q&A session with Mary Reilly. Plus A N Other - any ideas?
 Booking forms are already available, and if you book before the end of the year, you can have a small discount off the day delegate rate!!
Download the booking form HERE
Please note - the date says 12th April on the form - the hotel have messed up the date, and we've had to bring the meeting forward a week - I'll upload a new form in due course!
We have decided NOT to get involved in booking your accommodation this year - it's a bit of a headache for us, and you can sometimes get better deals elsewhere anyhow! Check the booking form for the hotel's website and for alternative accommodation close by.
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Coin Boxes
These are being despatched gradually to you all - if you re quire more, or have any issues with getting what you've collected to us, please don't hesitate to contact us for help.
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Myelin Masquerade Ball
Still lots of tickets available for this great fundraising event! You know you want an excuse to buy some new clothes, make a fool of yourself with a mask, and generally have a fabulous time! And, the best part - you don't have to worry about the shoes to go with the outfit, since as we're all in the same boat, it doesn't matter.
AND, you can help us raise lots of money for us too. What could be better!! Just ask us for a booking form!
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Hair Off, Wig On!
Our members are an amazing bunch, and are happy to do so much for charity - this story is from our Co-ordinator, Anastasia Daniells. Ana isn't actually raising funds for us - but her cause is well worth supporting if you can - read Ana's story for yourself: A few days ago a girl came into our shop . Her long hair was now pixie short. "Hair change?" I said... She explained that she had it tied into a pony tail and cut it off so that a little girl fighting cancer could have nice hair again in the form of a wig made by a charity just for children. "And I'll do it all again when my hair grows back " she said. It brought a tear to my eye.   She inspired me. For as long as I can remember I've had long hair. It's what I'm used to. It was my Birthday yesterday and I'm lucky enough to be well. I felt I should give something back because I know I'd want someone to do it for me or someone I care for, so..., although I'm scared I figured if friends would sponsor me the amount it costs on average to make the wig then I'd send in my hair with the money and the charity has all it needs to get cracking and make a lovely real hair wig to make a child feel like a princess again.
I've picked the Little Princess Trust because Jessie J first brought these charities to light through this particular one and I figured if you've heard of their good work you may be more willing to wing some money their way. There are many out there but I like the idea of a child becoming a "Princess" Please support this worthy cause. When I hit the £600 or when we get to Dec 1st (whichever is sooner) off my hair comes !!!! Dig deep guys :-) Visit my Justgiving page : www.justgiving.com/Anastasia-DaniellsHairOffWigOn
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Awareness Month
Awareness Month will be upon us before we know where we are, and Paula Hunter is already hard at work planning a media campaign for September - highlighting your stories, and emphasizing, this time, how much MORE we could do if we had the funds. If you would like your 15 minutes worth of fame, please complete a case study form, available to download here or, if it's easier, complete this SurveyMonkey form - http://www.surveymonkey.com/s/NS8GSXSIf you've done this before, there is no need to do it again, Paula has kept a record of your details and will be in touch if she is likely to need you.
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 We know that everyone wants to take part in research into CMT, but unless you are already a patient at a research centre, like Mary Reilly's clinic in London, it's not always easy or possible to be involved.
Well, there is a way - make sure you are part of the Inherited Neuropathy Consortium's Contact Registry. This Consortium is an international project, headed by Mike Shy and Mary Reilly, and you can complete a simple registration form and be informed of survey based research as and when a project pops up. The Contact Registry is securely housed with the International Registry at the University of Florida, and currently there are over 1,000 members in 28 countries! But they need more people to sign up - LOTS more!
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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 5th April at the Hilton Hotel, Swindon, Wiltshire.
And all this for only £22per year, or £27 for families! (New rates as from 1st October 2012) You can also now pay monthly by direct debit.
Join at www.cmt.org.uk - if you sign up for an direct debit, you can even have the first year free!
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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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Hope you're all enjoying the sunshine - I shall be outside shortly to soak up some Vitamin D!
Regards
Karen
Karen Butcher, CMT United Kingdom
0800 652 6316 or text 07790 789008
email: info@cmtuk.org.uk |
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