"Working to support people affected by Charcot-Marie-Tooth disease"

Spring is here....?

OK, so February went by and I forgot to complete this e-ComMenT!  Did you notice?  I guess not!

Anyhow, we've been deluged with paper since we sent out the AGM papers, membership update and survey, and of course Raffle tickets.

If you still have your update and survey forms, it's not too late to send them back, but we held our AGM at the beginning of March, so no point in sending those back now!  We've been really pleased by the number of people asking us to send information to their GP - we reckon this is the only realistic way of educating them on your behalf.

I'm also been happy with the response for the Spring Draw - I did wonder the cost of the tickets would put people off, but I'm glad to say it hasn't!  We're up to about £3,700 income so far, so thank you so much, and it's not too late to buy more tickets!  We'll be drawing it at the end of April, so plenty of time yet to share the link with everyone you know!



We have been really interested in the responses on the surveys - the one we do that you
seem to value most is ComMenT!  I suppose it's hardly surprising when many of you don't really have any contact with us except through the magazine. 

We've had lots of comments about it too - some slightly critical, but that's good - without construct criticism, how can we change anything or improve?

Interestingly, what most of you want to read are other people's stories.  To be fair, if we received any, we would publish them, but quite often we don't!

So please, if you have anything you want to share with others - the problems and the difficulties of having CMT, as well as the positive stories - we WILL publish them.

Another request was a kind of Question and Answer section too - you pose questions or problems to the members in one edition, and we publish YOUR answers and solutions
in the next. 

Another comment was that they want to hear more about CMT, research or other useful news like that - that's a difficult one, because quite often we actually don't get that kind of news.  Research news comes in occasionally, but isn't always something that can be easily translated into understandable English!!  

Overall, I think the message is - this is YOUR magazine, and we really need and value your contributions to make it interesting and relevant for everyone.

Contributions can be sent to me, Karen, or preferably directly to Andrew Sharpe, the editor on andrew@cmt.org.uk.   Articles should be accompanied with hi-resolution pictures too, please - it makes it more interesting! 
Take part in a new study for adults with CMT!  
Research suggests that living with CMT can negatively affect a person's quality of life. However, little research has looked at what 'quality of life' actually means to people with CMT.

By using a new method called 'Photovoice,' we are trying to find out what adults with CMT think about their quality of life and the things that affect this, both positively and negatively. To find this out, this study involves taking digital photos (using a smart phone or digital camera) and writing about them in a private online journal over a 2-week period.

To take part in this study you will need to be 18+, diagnosed with CMT (any type) and have access to the internet and a smart phone or digital camera.

This postgraduate research study is endorsed by the University of the West of England, the University of Worcester and CMT UK.

To find out more and register for the study, please contact lead researcher Elaine Walklet (Doctorate Student and Senior Lecturer in Health Psychology):

Email: e.walklet@worc.ac.uk
Telephone: 01905 542420

Sign up today!


Have a Go Weekend

We've been fortunate to get a grant to help with the costs of another Have a Go Weekend this year, so we're trying a new venue.  This is for adults over 18 to meet up, socialise, make friends, AND try some of the activities that perhaps you wouldn't normally think you'd be able to do with CMT!  Things like climbing, high wires and possibly even sailing or canoeing!!  But activities aren't compulsory, there will be time to relax and enjoy the scenery!

The date is 19th - 21st May at Whitemoor Lakes Activity Centre, near Lichfield in Staffordshire. 

We're opening this event to everyone, even non-members!  But spaces are limited and bookings close at the end of April.

You can find out all the details here https://have-a-go-2017.eventbrite.co.uk - it's just £100 full board, including all the activities.

Spring Draw

Just because we're not having a Conference, don't think you're going to get out of buying Grand Prize Draw tickets - we're just calling it the "Spring Draw", for a change!

But this year, we're opening the Draw to anyone, by doing it online!  You can buy tickets through Eventbrite, and add a donation on if you wish, and we'll enter your name in the draw equal to the number of tickets you've bought!   Eventbrite do charge a "per ticket" price, so we've made the tickets more expensive - £5 each - so we'll not waste your money on their fees - but hopefully, we'll raise the similar amount to usual.

Go to:  https://2017-spring-prize-draw.eventbrite.co.uk/ to buy your tickets.  Or phone the office, or send us a cheque to the usual address with a note of how many entries you'd like and we'll do the necessary.

Prizes will include a couple of cash prizes, plus as many donated ones as we can get.  We've already got a bottle of Champagne....!  If you can help us obtain prizes, please email me.


Annual General Meeting

The Trustees held the AGM as part of the recent Board meeting, and if you are interested, you can see the accounts at http://cmt.org.uk/about-us/governance-and-finance/finance/

It was also agreed not to raise the subs for another year, so that's good news.

In the elections, Karin Rodgers, Anton James, and Kevin Saunders were all re-elected for another three years.  Karin is no longer our Vice Chairman, but instead is Youth Development Officer, to better reflect her stirling work with our kids with CMT - so if you have any youth related issues, she's the person to contact (karin@cmt.org.uk).  Kevin Saunders is now Vice Chair.

Thank you for all your postal votes, it made the AGM possible!  And next year we'll be having a Conference as usual, although it'll be extra special. 
CMT United Kingdom | 0800 652 6316 | karen@cmt.org.uk | www.cmt.org.uk