|
The national support group for people with Charcot-Marie-Tooth
 |
|
|
CMT United Kingdom E-ComMenT
Greetings!
Lots of short snippets of news and information for you this time! In particular, please note my comments about the Conference..... I'm getting even more grey hairs!
By the way, we've had two visits from members to the office recently - please don't forget, if you're ever in the Bournemouth area, do come and visit - you might even get a cuppa!
Karen |
|
|
|
|
|
|
|
|
Annual Conference/AGM
You only have two and a bit weeks left to send in your booking for the Conference on 21st April at the Hilton Coventry - don't forget, the deadline for booking is 6th April!
You can download your forms from here
I'm starting to panic that the numbers are going to be way down this year.... please prove me wrong!
Just to let you know, there may be a change to the programme - I've been unable to contact the physiotherapist from Holland who was going to talk about CMT hands since she emailed to say she could come - but her shoes will be admirably filled by Gita Ramdharry if the need arises!
We also have our empty slot filled - Anne Ansell from Shopmobility UK is giving us an update on this useful service.
See you there! |
|
HealthUnlocked
We're always interested in finding new ways for you to find information, share your experiences and help each other with your CMT.
We have set up a new, free online community with HealthUnlocked where people can share their experience of CMT. Our community is now LIVE and ready for you!
You can find the community online here: http://cmtuk.healthunlocked.com/
How to get involved?
Register here https://cmtuk.healthunlocked.com/join. Then you'll be able to blog, ask questions, share your experiences and more.
Hope to see you online soon! You should also know that this is the only online community that is directly linked to the CMT information on NHS Choices, so if we can make this community active and helpful, we will be in a position to draw in more members to CMT United Kingdom!! |
|
YOUNG PEOPLE'S WEEKEND 2012
Don't forget you can book for the next YPW event at Bendrigg Lodge, Kendal on 26th-29th October. Email Karin at karin@cmtuk.org.uk for further information. The lower age limit is 12 and the cost will be £45. You can download forms and information at http://www.cmt.org.uk/ypw-events.php
Young people with CMT now have their very own section on the website - check out www.cmt.org.uk/cmt-youth.php and if you have any ideas for great ideas or content to share with your peers, get in touch and we'll see what we can do! |
|
Scottish Conference
For everyone north of the border (and south if you want to!), we'll be hosting a Regional Conference in Scotland - at the Hilton Hotel, Strathclyde on Saturday 15th September. Speakers and all the details are still being worked on, but mark it in your diary!
To book early and reserve your place, click here to download a booking form. |
|
Calling Welsh Members!
The Welsh Neurological Alliance is the secretariat for for the Cross Party Group for Neurological Conditions. Most meetings are held in Cardiff but once a year it goes "out on the road".
The meetings are open to all and below you will find information on the meeting in Old Colwyn, Clwyd, taking place on April 13. There is no cost for attendees and the WNA wishes to encourage as many members of its constituent organisations as possible to attend.
Download the invitation and agenda if you're interested for more information.
It's important that as many people as possible attend these sort of meetings, if you're at all able - it's only through attending and bringing CMT to the attention of all that we can ever hope to influence policy and neurological agendas, if that makes sense!
|
|
The Amazing Adventures of
Claude Mac Trevor
We're always amazed by (and grateful for) the novel ways that our wonderful members have for fundraising and raising awareness. Claude Mac Trevor is the invention of member, Sarah Campbell - and in case you're wondering what on earth is a Claude Mac Trevor, he's a dinosaur!! (What else?!). For a donation, Claude will get posted to you, to be photographed with you, and then sent onto the next donor. 
Claude visited the office last week to start off his journey and here he is, pictured with me! He's in London today, watching the Changing of the Guard!
If you'd like Claude to visit you, please go to www.justgiving.com/ClaudeMacTrevor to find out all the details. You can also find him on Facebook, Twitter and YouTube! He visits in a fabulous box, with his own activity diary so that you can share your experiences of having CMT with everyone else who donates!
Thanks go to Sarah for setting all of this up - we're very grateful! |
 Awareness Month
Awareness Month will be September as before - with a bit of luck, in collaboration with our friends from around the world as last year!
I haven't had a single volunteer for victims .... I mean people who are happy to talk to the press, share your story (and picture) with them! PLEASE, if you want to get involved, contact me NOW and I'll pass your details onto Paula Hunter, who will be co-ordinating our PR efforts for us. |
|
|
|
|
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.
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
|
|
|
Please book soon for the Conference - although it's less of a massive event than last year, with less well known speakers, it'll still be a great day. What makes these events special is the chance to meet others who know exactly what you're going through - for me, it's like a huge family renunion!
See you there!!
Regards
Karen
Karen Butcher, CMT United Kingdom
0800 652 6316 |
|
|
|
|
|
