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

Raising funds together!

So who noticed the lack of a June bulletin!!  Go on, be honest!  I didn't either, actually, until earlier in the week and thought "oh bother"!  I do have a good excuse - I had a week off in June, followed by a week in Yorkshire, attending the College of Occupational Therapists' Annual Conference, with a stand in their exhibition.  So we've educated a goodly number of OTs and future OTs! 

We'll be doing the same again in November for physiotherapists and in October for primary care folk - GPs, practice nurses etc.  These exhibitions are expensive, but worth tackling, we feel - if not every year (way too expensive) but every two or three years.

This E-ComMenT focuses on fundraising and fundraisers - your support for our work is always much appreciated, as always - but to do more, in terms of projects (like the Health and Wellness Days mentioned time), raising awareness and of course, research, we need ever increasing levels of funds!  Any help you can give to our efforts - whether it's actually giving yourself, or doing some sort of event, or inspiring your employer to do some thing is all great!



Be active for Charcot Marie Tooth disease awareness month.  Show you've got nerve!

For those of you who frequent Facebook, you may have seen this initiative over the last few years.  One of our members, Donna DeWick, is an American lady, living in London and she created an event to raise funds for CMTA's research fund, by selling special t-shirts and then encouraging people to do something active during Awareness Month.

I've been wracking my brains to come up with some sort of similar "mass" event, and then had a thought - why re-invent the wheel, lets see if we can get involved too.

Well, I'm pleased to say that Donna and CMTA were happy for us to collaborate on this and we will be doing an official launch at the beginning of August - but I just wanted to get some interest started!!  You can pre-register your interest on Facebook on the event page here - https://www.facebook.com/events/1798630850369155 and t-shirts will be available from our webshop shortly.  All profits from the sale of the t-shirts will go to our Research Fund.

By joining us in this awareness month event, you commit to be active in September 2016 (or anytime, really!), in whatever activity you choose.  Swim, wheel, ride, walk, paddle, run, do yoga and get out there to show that you've got nerve and that you support the search for a cure for CMT, the most common hereditary neuropathy impacting 1 in 2500 people.

We'd also like you to show your commitment to raising funds for research by using Justgiving and linking your fundraising activity to our Research Campaign page https://campaign.justgiving.com/charity/cmt/beat-cmt - then we can all see where we are, and what a long way we have to go.  Whatever you do, post your stories and pictures on the Facebook event page and we can all cheer you on!  And don't forget to use the hashtag #gotnerve4cmt to try to get some interest going!

This is the gorgeous logo that Donna has come up with for this year's Got Nerve and it will feature on the back of the t-shirts, which will be royal blue.

Come on, we've all GOT NERVE!

The Two Ball Rally

Well, I hadn't heard of it either!  So I had to Google, and it's a great rally, which everyone can take part in, using vehicles that cost less than £560!  (http://www.twoballbangerrally.co.uk/  if you're interested!)

There is a team taking part this year, raising funds for us and for another charity - they're doing the Beach Rally, driving from St Omer in northern France to Barcelona in four days!  So far they've raised almost £1000!  Thanks to Katie and Kayleigh Panton.

If you can support them, go to https://www.justgiving.com/teams/thebigvantheory and follow them on Facebook: https://www.facebook.com/thebigvantheory/

Note from Karen:

I personally have always wanted to do something like this, so my husband and I are going to try to do the Two Ball Original Rally in August 2017, raising funds for us.  Because of my personal situation, I can't fund it myself, so I'll be launching a crowdfunding event after Christmas to raise the funds to buy a vehicle and to cover all the other ancilliary costs, and then, do the main fundraising!  That's the plan anyhow - if anyone can offer any help, I'd be grateful to hear from you!

Other fundraising:

Kath Simpson and friends completed the Pass Portes du Soleil Mountain Biking ev
ent at theweekend, in atrocious weather - they've raised over £1300 so far

Member Craig Stubbs completed a Manchester to Blackpool Cycle ride in less time than he anticipated!  Support him on:

Anna Maguire completed the London Vitality 10K Run at the weekend and has raised over £200 so far -

And there are so many more, it's difficult to keep up with you all! 

Don't forget, you don't have to be able to run, swim or bicycle to raise funds.... what about organising a quiz, like Paul Abbott:

If you're in the vicinity of North London, why not contact Paul and get a team together!  He's raising funds towards a super-special event for our CMT Kids - a trip to Australia to take part in CMT Association Australia's version of our Young People's weekend!   Read more about it at

Having said above that you don't have to be physically fit to fundraise, I'd just like to remind you all that we do have five places in the Great South Run in Portsmouth on Sunday 21rd October.  Enter at  http://www.greatrun.org/great-south-run 

And you can also take part in the Bournemouth Marathon Festival - there are runs there to suit every ability, from 1.5K children's runs to a full marathon.  http://www.run-bmf.com/?charity-information&charities_id=806

All we ask, if you want a place in these events, is that you try to raise at least £500!

Thank you!

Scottish Conference

 Just a quick reminder of our Scottish Conference - 17th September at Hilton Edinburgh Airport.  Everyone in Scotland and Northern England on our database should receive a letter in the next day or two, but if you're not a member and would like to come, use this link to book:


Members should log into the Members Area and book there.

See that's another great reason to become a member, it'll cost you £10 less!!

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