May 2015


Well, April went by in such a blur that I forgot to do an E-ComMenT!  Still, it was all in a good cause, with the Annual Conference being one of our most successful for a while!

More news on that, and the date for next years event below!

I enjoyed my brief visit to Barcelona - the training course, I have to admit, was boring - but I will admit to being addicted to tapas!  We were able to escape the hotel in the evenings, and sample some of the local cuisine (and wine) - and I got to do a bus tour of the city twice.  I do highly recommend these "hop on, hop off" tours - I've done the same sort of thing in Washington DC too, and it's a great way of seeing the sights, without being too hard on your poor old tootsies!

Anyhow, continue reading - lots more interesting news below!


Online Training Module for GPs

Muscular Dystrophy UK and the Royal College of General Practitioners (RCGP) have come together to create the first ever online course for GPs on the presentation and management of neuromuscular conditions in primary care.


The new training module, which has been developed by a group of neuromuscular clinical experts, people with muscle-wasting conditions, the Bridging the Gap team and GPs includes important information in an easy to use format.  


The course will now help GPs have a better understanding of their role in the management of neuromuscular conditions (including CMT) and to recognise the key moments when a patient needs to be referred to a specialist neuromuscular service.


We've created a flyer for you to give your GP, which you can download here - that's an A4 (4 page) flyer that you can easily print, but if you'd like copies of an A5 folded flyer to give to them, just email me.


You can find more information (and get the link) about the GP eLearning module here at our website -    


PLEASE SHARE THIS VITAL RESOURCE WITH YOUR GP!  A letter will be going to all GP trainers (2,500 of them) during this month, but you can help us spread the word. 

Jeans for Genes

We're delighted to be able to tell you that we're receiving a grant from this year's Jeans for Genes campaign!  We'll be receiving £5000 in December, towards the cost of a Family Conference, for families with young children with CMT, probably to be held in the Spring/Summer of next year.  We've also secured some other grant funding too, so it'll be an affordable, fun weekend!

You can find out more about Jeans for Genes at and do encourage your children to get involved by getting their schools to hold a Jeans for Genes Day!  


Annual Conference 2015

Many thanks to all the folk who made Saturday 11th April such a great day!  The sound and vision stuff worked, everyone was cheerful and the speakers were great. 

The photos are uploading to Flickr as we speak and you can access the album from here -   The videos that were taken will be available in June, probably - Andy, who was taking them, has gone off to America on holiday!  How inconvenient of him!!

Annual Conference 2016

The date for your diary is 16th April 2016 and it will be at the Hilton Coventry again.  At this point in time, I have absolutely NO idea who the speakers will be, but don't worry, we'll come up with a great programme again for you. 

This event will also be extra-special because 2016 is the 30th Anniversary of CMT United Kingdom, so the tentative plan at present is that we won't have the usual "get-together" dinner on the Friday night before the event, but we will have a Gala Dinner/Dance on the Saturday night after the Conference.  This will also have an element of fundraising, so start saving now!  As soon as we've negotiated prices and whatnot with the hotel, I'll create the event on EventBrite and you can start booking!

a white birthday cake isolated on a white background with candles George is planning to try to get some sponsorship of this Dinner, which - with a bit of luck and a fair wind - will make it affordable for you!  If you can help - or may be able to acquire auction items or anything else that might help the event be even more special, do get in touch and let us know!  If we can get a team of volunteers (and that doesn't necessarily mean Trustees!) working on this, it'll make life easier for everyone - let me know if you'd like to help. 


Fundraising Update

George has been updating the Fundraising Section of the website, so please do check out all the changes.  There are opportunities for Big Fun Runs, Challenge events, Tea Parties and much more - anything you can do to help us, contributes to our mission of making life better for people with CMT in the UK.

Dorset Plane Pull

Is anyone up for pulling a Boeing 707 (or it may be an even bigger plane this year!) at Bournemouth Airport, Dorset on August Bank Holiday Monday this year?  We need to confirm our place - if we want one - by the middle of June, but we need at least 20 willing victims, sorry volunteers, who are willing to put their back into the event and raise some serious money at the same time!   Go to to find out more, and do watch the video - see if you can spot our team pulling their little hearts out!

Please let myself or George know if you'd like to take part.

Contact George on to find out more about any of our fundraising opportunities.


Kidz South 2015


Thursday, 4th June 2015, 9.30am - 4.30pm. Rivermead Leisure Complex,  RG1 8EQ


Free entry, accessible parking, fully accessible! Visitor's free entry ticket is now available!


View our Kidz Exhibition's video by following the link:


  • Do you know children and/or young adults with disabilities or special needs?
  • Are you a professional working in the same field?
  • Are you a parent or carer supporting a child or young adult with a disability or special need?


If you answered 'yes' to any of these questions then this FREE event is for you! Gain access to over 120 exhibitors offering advice and information on funding for equipment etc, mobility, seating, bathing, transport, sensory, transition, education, communication, legal matters, sports, leisure, fun and features for the children and much more!  


Click here to get your free ticket! 


And as always, don't forget to renew your membership promptly when you get your renewal letter, or go to to renew online.  It helps us more than you can imagine. 

We're also on a mission to increase our membership quite dramatically over the next few years, so if you have relatives with CMT who may not be members, let them know about how wonderful we are (!), and if there is anything you can do to put flyers or posters in your local hospital or clinic or surgery, please do ask - we can provide whatever you need.  There are an awful lot of people in the UK who may not know we're here.

Kind regards.



Karen Butcher, Chief Operating Officer  |  01202 432048