November  2015



E-ComMenT

  

Well, what an Autumn!  Yes, I know, I forgot to do an E-ComMenT for October!  Ah well, I'm sure you didn't miss us too much!  There was just so much going on, things to organise, places to go, people to see, that although I kept thinking "I must do that".... that was as far as it got!

I think I'm starting to get to grips with my new role as Fundraiser - we've just had confirmation of an Awards for All grant for a project for next year, which I'm chuffed about - there will be more on that soon, probably after Christmas!   And of course, you are all so amazing - I've got a form on my desk from a member who has raised £1800 through various events, we've got sponsorship money flooding in through Justgiving (almost £38,000 this year alone) and we're starting to work on more detailed information about leaving a Legacy.  Death is kind of an uncomfortable subject to discuss, but it is part of life, and a legacy is a truly lasting gift, especially if it can be used towards research for the future.

So, please, if you do have an urge to raise some funds, and don't quite know where to start, email me on karen@cmtuk.org.uk and I can send you some bumpf to give you some inspiration.  Also, if your company has a "Charity of the Year" scheme, do think about nominating us, or at the very least, finding out how to go about it - I can take over from there.  We can't hit our targets without your help!

Karen

Annual Conference 2016

Bookings are now open for the Annual Conference next year, if you want to get in early!  Paperwork will be sent to Members in the New Year, but if you want to jump the gun, you're more than welcome!

Remember, next year's event marks the 30th Anniversary of CMT United Kingdom, so we're scaling back the day's activities just slightly, to give you the energy for the PARTY in the evening!  But Mary Reilly is lead speaker, so she's always excellent for the best information on CMT and the latest research updates, and Gita Ramdharry is talking about physiotherapy issues.

The date is Saturday 16th April, at the Hilton Hotel, Coventry - just beside Junction 2 of the M6, so very easily accessible from pretty much everywhere.  It's a nice hotel, upgraded last year, fully accessible and they've got holding conferences for us pretty much down to a fine art!

So, to book now:

Members - log into the Members area of the website (phone or email the office if you have any difficulties or can't remember your username (your email address) and password) and you'll find a pretty widget thingy on the home page with a link labeled "register here" - click on that, and you can book your places. 

Non Members - go to http://cmt.org.uk/events/annual-conference/ - remember, non members pay the full cost that the hotel charges us - members get a preferential rate!

In both cases, if you want to book the Gala Dinner as well, remember to add those tickets to your booking.  As usual, we will not be getting involved with booking your accommodation, so you can contact the hotel direct (details at www.hilton.com/coventry) or do check out sites like www.hotels.com or www.bookings.com - quite often they are cheaper.  And there is also a Premier Inn across the road (Coventry East M6) 

Family Conference

As mentioned before (I think!), bookings are also open for our fabulous Family Conference next July, also being held at the Hilton Coventry.  This weekend event, kindly supported by Jeans for Genes, gives families with younger children with CMT (roughly 14 and under, but not a rigid rule!) a chance to meet, network, play, socialise and of course, learn from some amazing paediatric specialists in CMT!  The event runs from Saturday lunchtime, on 23rd July to lunchtime on Sunday, 24th.  The donations we've received mean that this is HUGELY subsidised - the cost is £50 per adult, and £10 for children, and is all inclusive (except your alcohol!).

Again, this is a Members ONLY event - so log into the Members area, browse to the Events page and book!

We've already had a few bookings, but we need lots more! 
 
Run a Marathon....!

Yes, I know that's not something you'd expect to read in a bulletin for people with CMT, but maybe you know people who are fit who would love to run for us, raising lots of dosh for research, or other projects and services.

We're chuffed that we've been able to obtain 5 places in a few of the "Great Run" series, namely, the Great North Run, Great South Run, Great Edinburgh Run, and the Great Manchester Run.  We have also applied for 6 places in the British 10K London Run.

We're also still offering places in the Edinburgh Marathon Festival and the Bournemouth Marathon Festival - both of these events feature full 26 mile marathons, half marathons, 10K, 5K and junior runs. 

And don't forget the Big Fun Runs - short 5K runs all over the country - possibly a bit more up our street, if you have a hankering to have a bash!  (wonder if you can enter using a scooter?)

For all the information about these events (but not how to twist the arms of your nearest and dearest!), go to http://cmt.org.uk/fundraising/run-a-marathon/   We're also developing a brochure for runners which will be available for download from there fairly shortly.


 
On the Move!

Well, it's all happening, the builders are working as we speak on our new premises (I hope!) and boxes are being packed!  There's one thing to be said for moving, it is a great opportunity to have

The view from my desk!
a really good clearout!   We're getting to that really uncomfortable part when there are more boxes than floor space, and everything is in a state of turmoil!

Obviously, as far as you are all concerned, we'll be working to minimise disruption to our service, but by necessity, there will be a few days when we won't be able to answer the phones, and I'm not even sure if voice-mail will be available for a day or two.

The scheduled date for the move is Wednesday 25th November, so we'll be pretty much incommunicado for the whole of that week.  Obviously, we'll still be able to access and answer emails remotely, but no packs will be sent out (they'll be in boxes, and we'll have to find them!) and as I said, no telephone calls.

Unfortunately, we're not able to keep our telephone number (the 01202 one) but 0800 652 6316 will remain the same - as yet, I don't know what the new number will be.  There will be an automated message on the old line to warn you to redial the new number!  And of course, all post will be redirected. 

I will send another brief e-news later in the month, just before we move, with the address and telephone number - the main number will be confirmed during next week, I believe.

So wish us luck!  If I'm never seen again, it's because I'm under that pile of boxes!!

Christmas Cards

And because of the information above, PLEASE PLEASE PLEASE - if you want any Christmas cards, could you get your orders in as soon as possible, so that we can get them out to you.  Stock is actually getting quite low - we didn't order any new designs this year (probably just as well, considering the move) - so if you want your orders before we pack the final few boxes, get the order in by 18th November.  Go to http://cmt.org.uk/shop/ and browse to Seasonal to see the designs on offer.  This one to the right, is one still available!


CMT In the News

Many many thanks to everyone who shared their story with us during Awareness Month and had their "fifteen minutes of fame".  You can read all the news stories (that we are aware of, and that were online) here - http://cmt.org.uk/news-and-press/in-the-news/


On a more serious note, I don't know how many of you may get Google news alerts, or read the likes of CNN news, but you may possibly have seen a story that has been all over the news in the States of a little girl called Julianna who has an incredibly rare and very severe form of CMT, who has made it clear to her parents, although she's only five, that she would rather "go to Heaven" than go back in hospital for invasive and painful treatment, the next time she gets ill.  The severity of her condition means that she uses 24/7 ventilation and cannot move at all without assistance. 

This heartbreaking story is difficult to read, but I would really like to reassure you all that she does have an as yet undiscovered genetic type of CMT and that for 99.99999% of the rest of us, the condition is still considered to be non-life threatening.  We need to keep this in perspective - she really is one in a million, and there is really no need to worry about this kind of tragedy happening to your children or grandchildren, especially for the most common types, which all together account for about 95% of all CMTs. 

I wasn't sure whether to include this in this bulletin, but just on the off-chance you've seen it and were worried, Professor Mike Shy did confirm to me that we really do not need to be concerned.  All we can do is offer our good thoughts and prayers to the family, and hope she doesn't get ill anytime soon.
I'm sorry to end this bulletin on a bit of a downer, but sometimes we do have to face the fact that life isn't always sweetness and light.

The most positive thing we can all do is continue to fundraise for Research in the hopes that a cure or viable treatment really is just down the road.  We're actually meeting with our Advisers in 10 days time to figure out a proper strategy to direct our research funding in the future, which should be a very interesting event!

So, anyhow, wrap up warm against this horrible cold, wet and foggy weather we're having, and I'll update you soon with the details of the new office and the confirmed contact details.


Kind regards.


Karen





Contact:


Karen Butcher, Chief Operating Officer

karen@cmtuk.org.uk  |  01202 432048