The national support group for people with Charcot-Marie-Tooth  

    

May 2011
CMT United Kingdom E-ComMenT

Greetings!

 

I'm sorry its been such a long time since the last e-ComMenT - April passed by in a blur - first of piles of paper and boxes ready for the Convention, then the actual Convention, followed by a haze of exhaustion.... good job there were so many Bank Holidays in such short order!!! 

 

And since May has been, it's been all go, catching up with all the things we DIDN'T do in April!!  

 

And in the midst of all this, my assistant, Lisa, gave birth to a daughter on Easter Sunday!  Emma Kate Yeates entered the world late on the Sunday night, weighing in at 7lb 5oz!  Lisa is doing fine and the baby is adorable!!  She'll be back in the office Emma- with Emma - very shortly, at least for short stints to start with.

 

 

Karen
In This Issue
International Convention
Conference 2012
CMT Kids Challenge
Family Conference
Regional Campaigning
Donate via TXT
Spring edition of ComMenT
Awareness Month
Last but not least....
Benefits of Membership
Social Networking
International Convention 2011

Well, I think - overall - it went very well!  Despite a pretty major problem with accommodation for some of the delegates, on the whole, you all seem to have enjoyed it!  Thank you for everyone who came - you made it our best ever event, and certainly the busiest,
Mary Reilly

Mary Reilly

numbers-wise!  It's a vast amount of work to put on for you, and we try to organise it to the best of our ability.  There were the usual glitches with the stupid sound system, and we didn't have the presentations on both screens in the main room until the second day, because I'd managed to leave a vital piece of equipment on the shelf in the office!!  We're replacing the sound system with something that WILL work better - or heads will roll!

I'm not going to give you chapter and verse here - because the next edition of ComMenT, in August, will be chock-full of workshop reports, pictures and comments from you about it all! 
Mary, Allison and CJ

Mary with Allison Moore and Carol Shapiro from the Hereditary Neuropathy Foundation,NY.

But thank you to the three delegates from Japan, who literally jetted in for the event, and jetted straight back, to Tracey from Australia, CJ and Allison who represented the Hereditary Neuropathy Foundation from New York, David Hall, representing CMTA in Pennsylvania, Marina Brocca from Rome, and Daniel Tanesse, from CMT France.  Last but by no means least, huge thanks to Dr Mike Shy who literally travelled for 36 hours to get to us - he was in Hawaii on the Tuesday before the Convention, and with us on the Thursday.....  and then he was volunteering to help hump boxes....!!  What a star!

 

Mike Shy
Mike Shy, from Wayne State University, Detroit.
  

Conference and AGM 2012

 

Oh no, not already, I hear you cry.... well, it has been booked for some time!!  But I agree.... I don't want to think about it yet, either!!!!

 

The date for your diary is Saturday 21st April 2012, at the usual venue of the Hilton in Coventry.  We have NO idea who will be speaking yet, but don't worry, we'll figure out some good speakers for you!   It'll be a very simple affair compared to this years event - no workshops, I've gone on strike!!  But we might be persuaded have a disco after the dinner on the Friday night - it's not a fancy dinner, just a get-together.  But we all enjoyed the chance to have a boogie!!

CMT Kids Challenge 

 

The CMT Kids completed their Challenge at the beginning of May - they'd set themselves the challenge of canoeing the length of Thirlmere, and cycling back. They managed the challenge reasonably quickly, everyone coped and pulled their weight (literally!), no one drowned - apart from in the inevitable rain - and they even were able to complete an abseil the following day - down a 60foot cliff, rather than the usual indoor wall!

CMT Kids

The total on the Justgiving page stands at over �3,600 and it's still rising. Thank you to EVERYONE who has donated, and if you haven't yet.... there is plenty of time. The Justgiving page can be found at www.justgiving.com/CMTKidsChallenge or you can send a cheque to the office at the usual address.

By the way, the next Young People's Weekend at from Friday 28th October til Monday 31st, at the Bendrigg Lodge, Kendal.  If you're over 11 and under 20-something, please contact Karin to make sure you get a place.  Booking forms will be available soon.
Family Conference

We mentioned in a previous edition of e-ComMenT that we were thinking about doing this event for families with a child (or children) with CMT under 12(ish), and their siblings, of course. Well, the application form has gone off to Awards for All England for funding, and the hotel has a date pencilled in - the minute we hear about the grant, we'll make booking forms available. 

The date is 5th/6th November - again, at the Hilton in Coventry, and the plan is to start at lunchtime with a child-friendly buffet, have a mixture of short lectures and entertainers in the afternoon (with things for the kids to do whilst the lectures are on), followed by an evening meal get-together, and more of the same on the Sunday morning.  We'll finish with a buffet lunch, and you can scoot home!
 
Places will be LIMITED to 120 maximum - to keep it small, friendly and intimate, so please email me on [email protected] to register your interest.  If you could let me know how many would attend, that will help.
 

Regional campaigning

  

Muscle Groups have been set up nationwide as part of the Muscular Dystrophy Campaign National Muscle Group Support Network. Individuals, families and clinicians have joined forces with the Muscular Dystrophy Campaign to demand action from the NHS and social services to urgently address poor services and gaps in care.We are making real progress securing support from the NHS, and we need their support behind the campaign now more than ever before.

 

If you would like to attend a meeting or for moreinformation on up and coming muscle groups please visit:

 

http://www.muscular-dystrophy.org/get_involved/campaigns/campaign_muscle_groups


 

justtextgiving
 Donate via TEXT message!

We've just signed up with a new free service provided by Justgiving, which allows you to donate to us via your mobile phone! 

 

All you do is text to 70070, followed by:
  • CMTK01 and the amount, if you want to make a donation to our general running costs
  •  CMTK02 and the amount, to make a donation to the CMT Kids fund
  • CMTK03 and the amount, to make a donation to our Research fund.
It's as simple as that, and we receive 100% of the donation!
Why not give it a try?!
Spring Edition of ComMenT

I'm sorry this is extremely late, but is now in the post and winging its way to you, even as we speak.  It was down to a whole host of reasons, which all piled up on poor Kate!  Still it looks great, and you'll enjoy it.  Actually Kate is leaving us as Editor after the next edition, but Trustee, Clive Harffy and his wife Angela, are going to take over, and try to keep it up to the high standard she's set! 

Many thanks to Kate for all her hard work for us!
 
PS - the electronic version will be available on the website very shortly, for those of you who don't get one in the post.
Awareness 2011
This is the logo which we've chosen to plaster all over everywhere for this year's Awareness Event, which is rapidly coming up - in September.  Watch this space, over the next couple of months for what we'd like you to do, to make this first International Awareness Event a huge success.

Last but not least... 
 

My brother in law, Jonathan Butcher, made 20 beautiful silk flower table centres for the Gala Dinner - all in the pinks and lilacs of our logo - they're about 10 inches in diametre, and probably eight inches or so tall.  If anyone would like one, we still have around 15 in the office.  I'm Table Centressure we'll be able to pack them sufficently safely to get to you....  If anyone would like one, donations in excess of �10 should do the trick!  Just send your cheque to the usual address, with a note, saying it's for a table centre.  We don't want them to go to waste!!!.

 

 

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!
Social Networking

 

 

Find us on Facebook

 

Follow us on Twitter
  
View our photos on flickr
  
Hope the weather brightens up for half-term next week - it was horrible down here in Christchurch today, wet and windy!  Don't like it.....!!!  And remember, if you're ever in the vicinity, we'd love to see you and give you a guided tour of the office!

Regards

Karen

Karen Butcher, CMT United Kingdom
0800 652 6316