"Working to support people affected by Charcot-Marie-Tooth disease,
 by providing information and funding research"

News, news, news!
 

It usually goes quite quiet in the office after the Conference... that part of the calendar is done for another year and we can get on with other things.

But not this year - the calendar is getting busier and busier!

Below are links to a couple of surveys that we'd like your help with, and some other oddments - like, for those in Scotland, booking is now open for the conference in September!

We had the first Health and Wellness Day last weekend - read about it below!  It was a fabulous day, and we'll definitely be going all out to raise funds to do these around the country, so more of you can get involved!  So any help you can offer with that - you know where we are!


Karen

Annual Conference 2016

Some of the videos are now available in the Members Area of our website - some of the "Telling Stories" session and the AGM.  We are awaiting Mary Reilly and Gita Ramdharry's approval of their talks before they can be published.

Next Year's Conference - Saturday 6th May 2017, at the Hilton Coventry.
Health and Wellness Day


This was an amazing day - I think everyone who attended enjoyed themselves.  Many people there had never been to any other event, so just meeting others with CMT was fabulous and the noise level at some points just highlighted that!

But the point of the day was the information and exercises being shared.  Rebekah Lee, the physiotherapist, really knows her stuff, and demonstrated all kinds of exercises to improve balance, strengthen leg muscles and other interventions.  You can see some videos of Rebekah that she produced for CMTA last year here at   http://cmt.org.uk/professionals/for-physiotherapists/exercise-videos/    Don't be put off by the "for physiotherapists" in the link - these are aimed at YOU, but we're trying to educate them!  She basically ran through all these exercises.

But the main message was - any exercise is better than none!  Find something you can manage, at whatever level is right for YOU, and that you enjoy, and try to incorporate a little bit into your day.  It doesn't have to be heavy sessions in the gym - you know your limitations best, but DO SOMETHING!  And no, doing exercise will not hurt you - some muscle soreness is perfectly normal - and you will NOT worsen your CMT by trying something new!

Donn, Dawn and Becky
Other speakers included Dawn Garwood, a nutrionist (and also Rebekah's mum!) who talked a great deal of sense about food and diet - you can read more about her work here       http://www.dawnnutrition.co.uk/.  What was really funny was the blueberry muffins that were delivered just after her talk!  Believe me, her advice didn't stop them being scoffed...!

Andrew James, a podiatrist from Cardiff talked about some of the issues with CMT feet, and last but definitely NOT least - Donna DeWick talked about CMTAthletes - a group of like-minded people on Facebook who are active, in whatever way works for them!  From fishing to triathlons, Donna talked about how wonderful it is to be part of such a great, support group of CMTers from all over the world.  She really inspired everyone there to understand that life with CMT does not mean life over.... it can mean, life just beginning!

More photos and a better report will be in the next edition of ComMenT!

We will definitely be putting on more of these events in the future, in different parts of the country, so next I need to get my head around raising the £12,000 odd per year that it'll need for three per year!  HELP!!
More surveys! 
 
I'm heading off to Amsterdam for a research workshop in June, talking about orthopaedic surgery.  Did you know that internationally, there is absolutely no consensus of opinion about what procedures are the "right" ones for CMT, or when, what degree of progression?  20-odd researchers from all over the world, plus me, a representative from ACMT-Rete in Italy, and another from Belgium will be trying to figure out this thorny problem.

CMT-Rete created a survey a few years ago about peoples' experience of surgery, and they've shared it with us.  I've turned it into a SurveyMonkey thing, and if we can get enough responses, I'll share the results with the people at the workshop.  Please only complete it if you have had CMT-related surgery.

https://www.surveymonkey.co.uk/r/CMT-surgery

 So you have 10 days to complete this, that's all, as I'm off to Amsterdam two weeks today, on 10th June! 

And you might remember this one from last year - we needed to hit 1000 responses to make it valid, and we only got to around 500.  So if you haven't completed this one about Charitable Giving, can you do it now please, and we'll see if we can hit our target!

 
                                           
Family Conference- still places available!


Come on - if you have young children with CMT, you know you want to come!  Just log into the Members Area of the website to find all the details and to book.  There are plenty of spaces and bookings won't close until the beginning of July!

Don't forget, it's heavily subsidised, due to the generosity of Jeans for Genes!
                                           
Scottish Conference

Our biennial trip north of the Border is now open for bookings!  The date for your diary is Saturday 17th September, and the venue is a new one for us - the Hilton Hotel right by Edinburgh Airport - which makes it easier with regards to public transport than the previous one at Strathclyde.

Speakers confirmed so far are Gita Ramdharry, our lovely research physiotherapist, and we're still sorting out the rest - there will be a neurologist, and if we can get hold of her, a podiatrist!  Definitely worth coming if the usual Annual Conference is just too far away - and it's not just for Scotland, anyone in the northern most part of England (or anywhere else, for that matter) is welcome to attend.  People in those area will be getting a letter in the post in June, but if you want to book early, here's the link to Eventbrite:

https://scottish-conference-2016.eventbrite.co.uk

And as a special treat, if you book before 17th June, you can take £5 off each ticket!  Use the discount code   cmt-2016  when completing the order!  So get your skates on, that's only THREE WEEKS worth of generosity (we are a charity, after all!!)

New Awareness Cards

Still got plenty of these in stock, so if you want to help spread the word, via your medical professionals, please email Yvonne and she'll post you some - enquiries@cmt.org.uk

We also have new stocks of "symptom" cards - little business card-sized information cards, giving basic details about what CMT is, with space for key contact information too.  Yvonne can also supply you with those too.
Changing Email addresses

Over the next few months, we will be changing all the official @cmtuk.org.uk email addresses to @cmt.org.uk (mainly because these ones are free!).  The Trustees have already been changed - contrary to the information on the back of the newsletter - so if you want them, email richard@cmt.org.uk; jeeta@cmt.org.uk etc.  The old emails will remain active for a while yet - both of mine are working, which is very confusing....!  Basically, if the @cmtuk bounces, try it again with @cmt.org.uk!!
CMT United Kingdom | 0800 652 6316 | karen@cmt.org.uk | www.cmt.org.uk
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