The national support group for people with Charcot-Marie-Tooth  

    

September 2011 - 2
CMT United Kingdom E-ComMenT

Greetings!

  

It's the beginning of the third week of Awareness Month.  How's it going?  Do you think we're making a difference??  It's difficult to tell, isn't it!

 

Anyhow, we've had some success with local publicity, and if you see anything, please do let me know and either send me a copy or a link!

 

Karen

 

 
In This Issue
Awareness Month Publicity
Facebook
Publicity So Far
Dates for your Diary
Benefits of Membership
Social Networking
AWARENESS MONTH PUBLICITY
 
So far we've had a double page spread in the Manchester Evening News last week, a piece in the Sheffield Star, and Trustee Richard Ouston is featured in this month's Saga Magazine.  
 
Other confirmed publicity (yet to appear in print):
  • The following regional papers are using the info with case studies: Western Mail, East Anglian Daily Times, Western Daily Press.
  • Scottish Sunday Mail,
  • My Weekly
  • Woman's Weekly
  • Easy Living (tweet or blog),

Dr Chris Steele, the "in house" doctor on GMTV has tweeted twice about CMT and has published information in his weekly newsletter - you can subscribe to his newsletter here - www.drchrisconfidential.com and gain access to the archive of previous newsletters - the info on CMT was published on 21st August.

 

And just received this cutting from Anthony Brown - who is setting off on his marathon cycle ride to Paris this week!!!  Good luck, Anthony - we salute you!!!

Global Awareness Day   

 

Saturday 24th September has been nominated as CMT Global Awareness Day, and we've been trying to think how we could get involved.

 

And what we've come up with is a Virtual Tea Party.... you log into a free chatroom, with a cuppa in one hand, and the keyboard in the other, and we all have a natter!  How does that sound?  Different, certainly!

 

We've signed up with a free chat room here - www.chatzy.com/cmtuk - the password is charcot1.  Log in at any time from 10am to 6pm on Saturday, and hopefully, there will be other people there to talk to.  Most of the committee will be in attendance at some point or other, so why not get involved, even it's only for a few minutes!

Awareness logo, version 2

 

Magical Muscle            

 

The Magical Muscle Show happened in Bournemouth on the Pier Theatre on 12th September.  Unfortunately, it wasn't as well attended as we'd hoped - we have no idea how much was raised yet - but it was an amazing show.  It was SO funny... some people I know were hypnotised on stage - it was hilarious watching them eating a spanish onion, thinking it was an apple!!!  Haven't laughed so much in a long time!!!

 

Thanks to everyone who did come out to the show, and to all the performers who donated their time for nothing.  A DVD of the event will be available for purchase in the not too distant future!  It will be worth watching, I promise you! 

Family Conference - 5th/6th November

You can download booking forms and a draft programme from here. 

All bookings should be received by 14th October, and places will be allocated on a first come-first served basis!  (Still plenty of places)

 

Please do think about coming along to this Conference - we've got some great speakers lined up for you, and some brilliant entertainment for your kids.  And of course, the most important part is being able to meet others and share experiences... 

 

Don't forget the cost is a fully inclusive one for you and your family and VERY heavily subsidised by the organisation, because we think you deserve it!

Are you in North West England

If you are, then you might be able to participate in some research into possible links between CMT and hearing loss, the University of Manchester needs to hear from you urgently.  Please contact Francesca Stirling in the next couple of days for testing later on this week or next week ONLY!

 

Her contact details are:

Tel: 0161 275 8566

Email: [email protected]

 

You can download a copy of the Participant Information Sheet here

 

Membership of CMT United Kingdom 
 

 

So  what are the benefits of membership?

 

 

Access to our members only section of the CMT website with its huge library of publications

Three editions of our full colour magazine. ComMenT, per year 

 Monthly e-ComMenT's with lots of extra news. 

Local groups around the country

Local contacts - there are almost 30 members around the country who are happy to talk to you by phone or by email - find the list on the website in the Member's Area

Discounted attendance at our fantastic Annual Conference - next one on 21st April 2012 at the Hilton Hotel, Coventry. 

 Access to our freephone helpline !
And all this for only �20 per year, or �25 for families!  
Join at www.cmt.org.uk - membership is free for the first year for new members!
Social Networking

 

 

Find us on Facebook

 

Follow us on Twitter
  
View our photos on flickr
  
Keep up the momentum, folks - we do seem to be making a difference.  And if you want more posters to put around your locality, it's not too late... just let me know and I'll post them out to you.
 
Regards

Karen

Karen Butcher, CMT United Kingdom
0800 652 6316