"Working to support people affected by Charcot-Marie-Tooth disease" 
     


CMT United Kingdom E-ComMenT

September 2013

So here we are - half way through the third (?) annual Awareness Month, and we've made a good start with publicity, beginning on 2nd of September, with myself and my daughter being on Sky News Sunrise, interviewed by Eamonn Holmes...!  Such a surreal experience, you've no idea!  The link to the clip on YouTube is below.

We STILL need more volunteers for local media opportunities - Paula is finding that local papers are not willing to feature someone they've already used, so we need lots more victims - I mean volunteers! 

And don't forget, anything you can do to spread the word, even it's only telling your work colleagues or families about CMT, all helps in the long run. 

 

Karen 

Another plea from Paula.. 

We still need people, especially those who have been really impacted by their CMT, to share their stories with the media.  If you could help, PLEASE PLEASE complete a case study form, available to download here or
http://www.surveymonkey.com/s/NS8GSXS

In particular, Paula would like to hear from people in North West England.  You can also email her direct at [email protected] if you have any concerns or questions.
Awarenss Ribbon 

And the story so far

For all the articles that have been published so far, and for that clip of me and Catherine on the telly, go to www.cmt.org.uk/news.php. 

Nigel Holland has been featured in a fantastic double page spread in Woman's Own, Gary Tannahill in the Daily Express (online version only), and Amanda and Emily Haylock in several regional papers and in the Press Association article that Sky News picked up on. 
In This Issue
Another plea from Paula
Awareness Month Sales offer
Other news
Exclusive videos
Myelin Masquerade Ball
Benefits of Membership
Donate
Social Networking
Awareness Month sales offer

Don't forget, for one month only - just during September - if you order anything from our webshop, you can take a discount of 15% off, just by typing in the code AWARE when you check out.  
A perfect time to get in your orders for Christmas Cards!!!

null    and as always there was an error on last month's e-ComMenT - the webshop's address is www.cmt.org.uk/webshop.php 
Other news....     
  
We've just today received information from Genetic Alliance UK regarding some patient involvement events in Wales during October that you might want to get involved in, if you're in Wales:

Accessing specialised services and medicines in Wales 
Patient Engagement Events 2013

Genetic Alliance UK will be holding events across Wales in October for patients and families affected by rare conditions to talk about their experiences of accessing specialised services and therapies.

The project itself developed after patient organisations raised concerns over gaining access to specialised services which are provided by centres in England. Some patients have also experienced problems in gaining funding for medicines through Individual Patient Funding Requests in Wales. We want to hear your views.

How can you get involved?

Events will provide an opportunity for patients and families to come together to highlight their experiences and discuss recommendations for improving fair access to services and therapies for patients.

The events will be held at the following times/venues:

17th October, 10.30 - 14.00, Maldron Hotel, Cardiff
23rd October, 10.30 - 14.00, Dragon Hotel, Swansea
30th October, 10.30 - 14.00, Metropole Hotel, Llandrindod Wells 31st October, 10.30 - 14.00, Ramada Plaza, Wrexham

Complimentary refreshments including a buffet lunch will be provided.

Please email Emma Hughes, [email protected] if you are able to attend specifying which event you will be attending along with your name and contact details.


And in Cheltenham:

I am writing on behalf of the Gloucestershire Neurological Alliance, which is a group of people with diverse neurological conditions and interested charities who meet regularly to try and work with the local CCG and social care services to improve the services to those with neurological conditions in the county.  

 

We have only been in existence for 2 years and are seeking to make people aware of us and to kindle interest in joining us to make the local voice as strong as possible. www.glosna.org.uk .

 

To that end we are taking the opportunity to use the information bus administered by the Glos CCG in Cheltenham on October 10th 10am -4pm and it will be parked in the town centre with the aim of promoting not just our own organisation , but the work done locally by the many charities who serve those with neurological problems.  

 

If anyone would like to go along to meet us, we'd be delighted to see you.

 

Jean Waters  

Email: [email protected] for further information. 

 

Exclusive videos

During September so far, I've been trying to post something new and interesting every day on Facebook - it's not easy, I can tell you!

But we do have one great asset - Professor Mary Reilly!  During the Conference this year, in April, we filmed her Question and Answer workshops, and this has now been edited into 16 short videos.

So, every other day or so, I've been releasing one of these videos onto YouTube

You can find our YouTube channel here - http://www.youtube.com/user/CMTUnitedKingdom with the videos released so far, and don't forget to keep checking back for the latest clips!

Frustrations and coping with CMT
Frustrations and coping with CMT



Myelin Masquerade Ball

 

We all had a blast at the Ball on 7th September, held at the Highcliff Marriott Hotel in Bournemouth.  

 

This link takes you to a slide show of some of the photos taken of us all in our finery, if you're interested!   

 

And the nitty-gritty - we raised just over �500 for the Young People's Weekend.  

 

Thank you to everyone who attended - and to everyone who didn't come, you missed out on a treat - good food, good wine, good music, and great company.

 

 

 

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 5th April at the Hilton Hotel, Swindon, Wiltshire. 

 

 And all this for only �22per year, or �27 for families!  (New rates as from 1st October 2012)  You can also now pay monthly by direct debit. 

Join at www.cmt.org.uk - if you sign up for an direct debit, you can even have the first year free!

 
Help us continue our work
If you can make a donation, you can use your Paypal account here

Donate

 

 

 

 

  
 
 


Social Networking

 

 

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  View our photos on flickr
 
 
View our videos on YouTube




Lets keep the momentum going of Awareness Month - hand out your flyers, change your Facebook profile pic to the Awareness Logo, and keep talking about CMT to all and sundry - it's the only way to make a difference.



Regards 

 

Karen

Karen Butcher, CMT United Kingdom
0800 652 6316 or  text 07790 789008
email: [email protected]