February 2015



E-ComMenT


I finally feel like Spring is on it's way.... although the weather was very grotty this morning here in Bournemouth, the sun is now shining!   Thank goodness, I've had enough of Winter!

We've been very busy here dealing with the design and implementation of a dramatic upgrade to our website.  I'm not sure exactly when (as of today) when it'll go live, but it'll definitely be during March.  Keep checking back on www.cmt.org.uk for a surprise!!  It will be what is known technically as "responsive", so if you check it on your mobile, it'll be displaying properly for that size screen.

If you are an existing Full Member and are registered on the current website system, you'll get an email when it goes live (or around that time) with your username and a temporary password to allow you access the Members Area.  The Members Area has been greatly enhanced, so there are more reasons than ever to upgrade your membership to become a Full Member!

One thing that WON'T be transferred to the new website is the Forum.  I'm sorry for those die-hard users who like it, but it just isn't used enough to justify the expense of implementing something similar.  There will be a "secret" Facebook group just for Full Members, and there will be information in the Members area explaining how to access that.  Making it secret means it physically won't be visible to any other Facebook users, other than those who are added to it by us, thus keeping it "nutter" and spam-free!  I hope you'll agree that those are things to be avoided!!

And if you do use Facebook do check out the article below about UK Regional Facebook groups - we've implemented most of those in the last two weeks, and some of them are already become really nice places to chat with people in your area. 

So, keep your eyes peeled on the website - we hope you'll be impressed!


Karen


REMINDER!  Annual Conference


If you're intending to come to the Annual Conference PLEEEEEEASE book as promptly as possible - it makes our lives easier if everyone is booked well in advance.  Bookings close on 1st April WITHOUT FAIL!!

You can find all you need to know at http://www.cmt.org.uk/annual-conference.php including online booking.

AND if you are coming, questions for Mary Reilly and Mike Shy MUST be submitted to me in advance.  I will be emailing everyone who is attending nearer the time, but it's just a quick reminder.   Please keep your questions as impersonal and as general as possible, then they are interesting for everyone.


If you want to stay at the hotel, do check their website ( www.hilton.com/coventry) and any offer websites, like www.bookings.com before you book, as we've been made aware that they may have some special offers, which are cheaper than our negotiated rate. 

Facebook Communities

Being part of a community is an essential part of living well with CMT, and we have a number of ways for you to interact with others in the same situation.

 

For Supporters and Members, we have opened a number of "closed" regional Facebook groups in the following areas - to allow you to interact with people in your locality (and strictly ONLY those in the right areas of the UK and Ireland).  Who knows, perhaps the friends you make there will become "real" friends!.  Only people on our database will be admitted to the groups, so if you want to join one of them, reply to this email to send your name and address to us.  We'll check the database - if you're on it, we'll send you an immediate invite via Facebook to join the relevant group - if you're not, we'll add you to the database and send you a Supporter's Pack (and then send the Facebook invite)!

 

 

South West England - covering postcode regions BA, BH, BS, DT, EX, PL, SN, SP, TA, TQ, TR  

 

South East England - covering postcode regions BN, CT, GU, HP, ME, PO, RG, RH, SL, SO, TN

 

London Region - covering postcode regions BR, CR, DA, E, EC, EN, HA, IG, KT, N, NW, RM, SE, SM, SW, TW, UB, W, WC, WD

 

East Midlands/East Anglia - covering postcode regions AL, CB, CM, CO, IP, LN, LU, NG, NR, PE, SG, SS

 

West Midlands - covering postcode regions NN, B, CV, DE, DY, GL, HR, LE, MK, OX, ST, SY, TF, WR, WS, WV

 

North West - covering postcode regions BB, BD, BL, CA, CH, CW, FY, HD, IM, HX, L, LA, M, OL, PR, SK, WA, WN

 

North East - DH, DL, DN, HG, HU, LS, NE, S, SR, TS, WF, YO

 

Whole of Wales 

 

Whole of Scotland

 

Ireland - North and Republic

  

 

 

We'll look forward to seeing you there soon!

 

 


Kings & Queens are looking for some tarts!

 

Your Summer Fundraiser theme is 'Wonderland' and we are looking for Tea Parties to rival the Mad Hatters.

 

 

 

Call us or email george@cmtuk.org.uk for your fundraising pack which will include all sorts of fundraising ideas for Spring and Summer Cake, Muffin and Tea parties.

 

(Did you know Alice in Wonderland was published 150 years ago?)


Lisa and Karen on Christchurch Beach!


See My Tea!! 

 

 

Lisa Yeates is enjoying Tea by the Sea as she says a temporary farewell to CMT to have her third baby. We wish her well and look forward to her return later in the year.

  

Lisa's farewell challenge is to ask everyone to get a picture of themselves enjoying a cuppa. We have a prize for the picture taken in the most unusual place. Send your pictures to us by emailing them to Karen at the usual address!

 

 

Annual Conferenc e - take 2!
 

Greetings:


In preparation for my presentation on the psychology of CMT at the Conference on April 11, I'd be very grateful if you could complete a short online survey about how CMT has affected you and your life. It should only take a few minutes of your time. All responses are strictly confidential and the results will only be used in aggregated, statistical form.

 

The survey is only for adults who have CMT.

 

If you completed a similar survey for me last summer/autumn, I'd be grateful if you could still do this one, too, as it has changed.

 

To access the survey, please go to:


https://www.surveymonkey.com/s/SRRPGR6 

 

With thanks and best wishes,

 

John Barton  

Wales Neuromuscular Network (WNMN) Educational Programme

 

CMT Management - An educational session for patients and carers

  

To be held at Neath Port Talbot Hospital on Tuesday 14th April 2015

 

 

If you'd like to go along, download the official flyer and programme here for all the details and for the contact details of the organisers.

 

Welsh Co-ordinator, Sara Flay, will also be there - contact her on wales@cmtuk.org.uk. 

Hereford and Worcester Group

The new - and very small - Hereford and Worcester group is aiming to meet in the next few months again, in the Hereford area

Anyone who is interested in going along should contact Charlotte Blake-O'Brien on charlotte@cmtuk.org.uk or phone her on 0845 0132707.  If you have any ideas for suitable, accessible venues, that won't cost a fortune, Charlotte would be interested to hear about them!
I think that's about all I need to update you with for this month - if there's anything you want to know about the Facebook groups, website or anything else, you know where we are!

Remember, Lisa Yeates (in the office) finished on Friday for her Maternity Leave - she'll be back on very much shortened hours in May, and back properly in October.  I know you'll join me in wishing her well.  But remember, that means there's only me to keep up with all the membership and admin stuff, so be gentle with me....!!! 


Kind regards.


Karen





Contact:


Karen Butcher, Chief Operating Officer

info@cmtuk.org.uk  |  01202 432048