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

    

January 2012
CMT United Kingdom E-ComMenT

Greetings!

  

Hope you all had a great Christmas and New Year.  We had a lot of fun, and ate far too much chocolate.  The diet starts tomorrow.....

 

On a personal note, my foot is out of plaster, but it's taking a while to feel like my foot again!  I'm sure it will soon, but in the meantime, I'm struggling a bit - but it's not stopping me from being in the office, nose to the grindstone!

 

We've got lots of exciting things planned for 2012, so keep your eyes peeled for these bulletins to keep up with the latest news from a very windy Bournemouth!

 

Karen 

In This Issue
Annual Conference
Young People's Events
Scottish Conference
Fundraising
ComMenT
Benefits of Membership
Social Networking
Annual Conference/AGM 
 
We have lots planned for 2012 already, and of course, the most important is the Annual Conference on 21st April, at the Hilton Coventry.
 
During the course of January, all the paperwork and Grand Prize Draw tickets will be printed and sent out to you. 
 
Those of you who DO NOT normally get a copy of ComMenT by post will also NOT receive anything in the post except your Grand Prize Draw tickets.  You'll receive an extra bulletin from me with all the documents to download either directly from the email, or from the website. 
 
The deadline for booking the Conference will be FRIDAY 6th April - please, please don't confuse me by trying to book after this!  I'm very easily confused!  And bear in mind, we do NOT normally acknowledge bookings unless you specifically request an acknowledgement.  However all booked delegates will receive minutes of the last AGM, Annual Accounts and directions to the Hilton approximately two/three weeks before the event. 
 
Booking forms are already available to download from the Members Area of the website, if you want to get in early!

Young People's Events

 

During the course of last year, we received approximately £2,000 in memory of John Welsh and Courtney Davis, which we were asked to use for an extra Young People's Event.

 

TenaciousJohn, in particular, loved Canal Boating, so we've been trying to find an water-borne event to use this funds on, so we have been making enquiries with the Jubilee Sailing Trust - a charity who own two three-masted schooners, entirely disabled-friendly and accessible and we are in the process of organising a day trip in July for our young people.

 

The tentative dates so far are EITHER 28th or 29th July.  The ship, Tenacious (pictured left) sails from Southampton at 8.30am and is back by 5pm, with lunch and refreshments provided.  If you're a  long way away, there could be sufficient funds available to fund a night's accommodation before and/or after in a cheap motel nearby - just let us know if you might need this.

 

The lower age limit is 12 and there are 12 places.  The cost to us will be £99, but we're subsidising this event as usual, and the cost to your teenager will be no more than £20 (yet to be decided!).  However, after problems with last year's Young People's Weekend, with people booking and not turning up, if you don't turn up without a VERY good reason, you will be charged the full cost of the trip.  I think that's only fair - we are a charity, after all!!

 

If your teenager is interested - PLEASE email me by Friday 20th January, as we need to book and confirm this trip by the end of January in order to secure places on either of those dates.  Indicate your preferred date, and whether you would require accommodation. 

 

 

YOUNG PEOPLE'S WEEKEND 2012

 

Karin is already organising the next activity weekend, which will be at Bendrigg Lodge, Kendal again, and will be either the weekend of 19th-22nd October or 26th-29th October.  As always, the event will be action packed, with rock-climbing, canoeing and no doubt LOTS more!  Email Karin at karin@cmtuk.org.uk to register your interest, and then she'll know who to send forms and whatnot to, when the time comes.  The lower age limit is 12 and the cost will be approximately £45 (to be confirmed).  Again, no shows will be charged the full rate - which is approximately £300!  She's waiting to hear from you NOW!

 

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!

 

And if you would like to talk to, or meet up with, our Trustees in Scotland, email either Richard or Jeeta Ouston (richard@cmtuk.org.uk or jeeta@cmtuk.org.uk) and they'll be happy to meet you, or have a natter or whatever! 

FUNDRAISING 

 

As you are all very much aware, we rely entirely on subscriptions and donations for ALL our income in order that we can carry on supporting you to the best of our ability. 

 

We know that times are hard, and what with the squeeze on disability benefits, likely to get harder, but you can help us in some easy and relatively painless ways:

 

Firstly, subscriptions - PLEASE can you a) respond quickly and promptly to our letters, which saves us money in sending reminders, and b) pay by direct debit, which allows us to administer your membership with the least possible hassle to you.

 

Secondly, donations - extra donations on top of your subscriptions are wonderful and help us greatly.  But if you can't afford to do that, even a couple of stamps helps! 

 

And don't forget to check out www.justgiving.com/cmt for all the nutters who are doing wonderful sponsored events for us - they are all listed there.

 

If you want to try your hand at fundraising yourself, we've lots of ideas and resources at www.cmt.org.uk/fundraising.php - it's not even too late to hold a Cake, Muffin and Tea Party, if you really want to!

 

And there are other even more painless ways -

 

Recycling - we can gain money from mobile phones, any brand of ink-jet cartridge and from used postage stamps.  We can send you envelopes for the first two, and if you could send stamps roughly trimmed, that helps a lot.

 

Online shopping and search engines:

 

Do your online shopping by starting at www.easyfundraising.org.uk - register and log in - you'll be asked for your preferred charity, and you can find us listed.  Thereafter, any shopping you do via that site, we'll gain commission on.  There's another here at www.spendandraise.com/cmtuk/ - you don't even need to register at this one.

 

And when searching the net, use www.everyclick.com/cmtunitedkingdom - they also have a shopping portal. 

ComMenT

We had far too many copies of ComMenT printed last time (Winter 2011 issue) so if you would like extra copies to give to your GP, neurologist, physiotherapist, family, friends, school or anyone else who might be remotely interested, just let me know and I'll send you a bundle.

 

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

 

 

Find us on Facebook

 

Follow us on Twitter
  
View our photos on flickr
 
View our videos on YouTube

So stick with us throughout 2012 and see what else we can come up with, to entertain, help and support you!  If there is anything else you want to share, or help us with, please do get in touch!
 
Regards

Karen

Karen Butcher, CMT United Kingdom
0800 652 6316

 

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