August  2015



Awareness Month is approaching fast, and we need your help!

Read on to find out what you can do!


Get Involved with Awareness Month

Find out all the ways you can help us with Awareness Month on our website - from simple things like changing your profile picture to the one below, or to complicated (possibly!) things like raising an obscenely large amount of money!

Awarenss Ribbon


 (if you need to know how to change your profile picture, just email and we can give you instructions!) 




In order to help us gain some insight into your experiences of CMT for our press releases and to give some credible data that the media love so much, we've devised a survey.  It's completely anonymous and will take you no time at all to complete.


It's REALLY important that we get at least 1000 responses, so as this is going to over 3000 people - we would hope that that should be easy!  We would also like you to share this with anyone else you know with CMT!

The second survey is for anyone - with or without CMT - and is all about charitable giving - do you do it, what motivates you and stuff like that!  Again, it's all useful data that we can use for publicity purposes

Again, it's really important that we get LOTS of responses, so please share with everyone you know!

Thank you - we really appreciate your help. 

Share your story

Paula Hunter
And once we've got the survey data we need, we really need people like you to agree to help us with our media campaigns by agreeing to be a "case story".

You can give us your brief details by going to and Paula Hunter will get back to you to talk to you further about your story.

Or if you like, you can contact Paula directly if you wish, or ring her on  07739 989915

Ideally we would like to hear from some new people - if you've volunteered in the last couple of years, you're off the hook this year! 
Awareness Kits

And last but not least, about Awareness Months - you can buy a "kit" of information - posters, flyers, copies of "What is CMT", silicon wristbands and a car sticker - from our webshop for £10, plus £3.50 postage and packaging.  (Or ring and order by phone, of course!)

Check out the pack here -  
Membership - Together we ARE stronger

As we've mentioned before - and will mention over, and over, and over again - we need more members.  Many of you who receive this e-ComMenT aren't Members or even "supporters" - in other words, apart from this email, you have no other link to us at all.

We do really need to emphasize how important your support is to us. 

Currently the income we receive from subscriptions pays for the rent of the office and some of the salaries - but not a lot else.  Annually, it's around £25,000 in income.
   More members paying £22 per year - or ONLY £2 per month (by direct debit), would mean that far more of your fundraising and donations are actually used for projects benefitting people with CMT in the UK, including more research.
If every person getting this newsletter paid a subscription (and we know a large number of you do, to be fair) - that would be £66,000 income alone, plus the all
the people on our database who don't get this - that's a whopping amount of money, and would take care of ALL the overheads, all the costs associated with producing ComMenT, the website and would allow us to subsidise the Conference even more - and who know s what else?!

Go to to find out the benefits of becoming a member and to sign up.

Join our lovely family of CMTers today!  You know you want to, really! 

Awareness Video


I know there have been some concerns about the awareness video that we mentioned last E-ComMenT, and the concept of using the Ministry of Silly Walks as a basis.  


Superficially, the film will begin with a few seconds of a recreation of that iconic sketch in order to engage the audience, but the film isn't intended to be humorous, the idea is that it will be enlightening and uplifting.  The film never mocks or patronises people with CMT and hopefully, it will help put an end to everyday ignorance that comes through a lack of awareness.


The voice over (which we're still hoping will be John Cleese himself) will explain that this walk isn't "silly" but is the manifestation of a serious disease.  The film will go on to explain about the assumptions that some people make, and will explain a little more about CMT and how the lack of awareness causes difficulties for people affected.   


The emphasis is definitely that there is help out there, and with greater awareness of CMT, things can only get better.  It's intended to be positive and optimistic. 


To help with funding this great video please go to




By the way, our new staff started last week - Kim Shires will be working from 10am to 1pm and Yvonne Cable from 1pm to 4pm - both Monday to Friday.  They both bring lots of experience to the organisation - Kim is hugely experienced in admin and accounts (and has CMT too) and Yvonne is an Occupational Therapist who has chosen to leave clinical work for the world of charity!  You can contact them both on for any queries with your membership or general enquiries.

Anything else, contact me on

Kind regards.



Karen Butcher, Chief Operating Officer  |  01202 432048