Well, International Awareness Month has kicked off in style, with Paula working hard to get some national coverage in the media. She was very lucky to get a short bit entitled "Website of the Year" about us in You Magazine (which accompanies the Sunday Mail) and on the Mail Online, which has a staggeringly huge hit rate!
The latest news is featured on our website on the homepage, or you can click "News and Press" on the top right of the homepage, and then select "In the News" from the menu bar to see all the coverage so far.
Not to late to.....
Get Involved with Awareness Month
Find out all the ways you can help us with Awareness Month on our website at http://cmt.org.uk/awareness/get-involved - Awareness really can be as simple as talking to your friends and relatives about CMT.
Another really important part of Awareness raising is talking to your consultant / GP / medical professional of any variety and telling them about CMT, and also about us! We can only share what we do with others with CMT, if they know we exist. And many people don't know we're here. Remember to also ask for flyers to give to your GP for
Muscular Dystrophy UK's online training course for neuro-muscular conditions. It all helps!
You can find the latest news on the home page of our website, and all news that we hear about here:
The surveys mentioned in the last E-ComMenT are still open - if you haven't yet responded, PLEASE do so!
It's REALLY important that we get at least 1000 responses, so as this is going to just under 3000 people, that should be easy! But from the last email, we only had about 2% of you taking part, which is disappointing, really. Please help by going to
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! We've actually opened a new survey, in which you can leave your email address if you wish (we will NOT use it for anything else), and you could win a £25 Amazon voucher (donated!). So if you'd like opportunity to get something for 60 seconds effort, please go to
Thank you - we really appreciate your help.
Share your story
Keep an eye on our Facebook feed for opportunities to help with the media campaign for Awareness Month, as Paula will be concentrating on regional media shortly. If you'd like to help, please email her on email@example.com.
Membership - Together we ARE stronger
We will be conducting a review of our Membership services during the latter part of this month
to reduce what Supporters received (sorry!) but to greatly enhance what Members get (yippee!!).
So for the very last time - if you are currently a Supporter of CMT United Kingdom - here's the Summer Edition of ComMenT. In future, these will ONLY be available by post or email to paying Members.
It really is worth joining - a new venture for next year and thereafter will be "Health and Wellness Days" - small, very personal seminars, dotted around the country (funding permitting), lead by a physiotherapist who has CMT herself, and including talks from a podiatrist/occupational therapist/dietitician, plus practical exercise sessions. These will only be available on a hugely subsidised basis to Members, and are designed to help you get back in control of your CMT.
The same goes for our Family Conference and the Young People's weekends - these fun-filled, action-packed weekends are only open to paying members.
And as our funding increases (my new role!), so hopefully, will what we are able to offer will also increase.
If you want to come along for the ride - please, please pay to become a member. Seriously, for a single member, you're talking £2 per month (by direct debit)! Fantastic value!!
Unfortunately, our current landlord is not renewing our lease on our current premises at the beginning of December, so we've had to find new premises.
Fortunately, we've found a place in Christchurch, but it will need some building work/ adaptation to make it habitable for us - essential stuff like a disabled-friendly loo! It's a much larger building, so we're hoping, in the shorter term to sub-let the first floor, but maybe in the future, when we do expand our services, so we can expand into the extra space (tenants and leases permitting of course!). The building isn't as nice to look at as our current office, nor is it in such a lovely place, but as long as it'll do the job, that's the main thing. And it's a good price for the space, that's very important!
So, if anyone has an urge to make a donation towards the building works, that, of course, would be much appreciated (go to http://cmt.org.uk/donate-to-cmt/) or if you can help with more practical stuff - are you an electrician? Carpet fitter? Kitchen fitter? - then please get in touch with me at the usual address and we can have a chat.
Obviously, we'll keep you all in the loop, as to addresses and whatnot - there will almost certainly be a week at the end of November when we'll be cut off from phone/broadband - but we'll endeavour to make sure that normal service gets resumed as quickly as possible.
So another busy few months are approaching! I'm away next week on the second "face to face" part of the course I'm doing about new drug development in Barcelona, and at the end of September, I'm on Jury Service!! But I will be checking emails regularly whilst I'm not in, and you will get either Kim or Yvonne on the phone (but mornings only next week, Kim is also away) to help you.
Hope the weather is kind where you are - lovely sunny day here in Bournemouth today, but distinctly nippy!