August 2014

E-ComMenT

OK, who's nicked the sunshine? What are those white/grey things in the sky?! It feels really autumnal outside. I don't like it - I'd rather be moaning about how hot it is in the office!!!! Are we ever satisfied with the weather in this country - I think not!

As long as it's dry on Monday for the Dorset Plane Pull, I'm not bothered. Don't forget, you can come along and cheer even if you're not pulling, and please don't forget to support the fundraising effort, which is the whole point, of course!

I've also combined this email with the extra one that usually gets sent to people who have ComMenT via email! Another great edition for you to read.

Karen

Not long now to Awareness Month...

Start keeping your eyes peeled on the News page of our website, where we'll try to keep up with the publicity that's generated during Awareness Month. Paula has managed to get the Press Association interested in a story about mis-diagnosis, so that's really good news. Their news wire is how we managed to get featured on Sky News last year, so maybe we'll be lucky again! The page is www.cmt.org.uk/news.php

Don't forget, we'd like you to get involved too:

Host a Cake Muffin and Tea Party, to raise awareness and funds - details at www.cmt.org.uk/Teaparty.php

Or, if that's a bit too much, purchase an Awareness Kit from our webshop for Ł10 -
http://www.cmt.org.uk/catalogue.php?&cid=7&pid=34

Change your Facebook profile picture to the Awareness Logo (above).
And you can also buy a badge in our webshop of this same image - www.cmt.org.uk/webshop.php

"Like" us on Facebook - www.facebook.com/cmtuk

Take a Family Selfie - as mentioned last month - take a picture of you and a member of your family, linking fingers, and post it on your favourite social medial site! And don't forget the important bit = the donation!! At least we're not asking you to throw a bucket of iced water over your heads, like the latest craze for Motor Neurone Disease awareness!!

And just talk to people about CMT! Generally speaking, people are kind and interested. You can get some "quick facts" here - http://www.cmt.org.uk/cmt-facts.php

Message from Nichola....

This summer has been action packed with loads of fundraising events, challenges and activities!

LONDON TO BRIGHTON CYCLE CHALLENGE

We have five brilliant participants taking part in this challenge on Sunday 7th September for CMT UK, cycling a total of 54 miles! We wish them all the luck for the day and a BIG thank you from all of us here!

DORSET PLANE PULL EVENT:

This bank holiday Monday (25th August 2014), Bournemouth Airport will be hosting the Dorset Plane Pull. Teams will be competing to see who can pull a 35,000kg Boeing 737 a distance of 50 meters in the fastest time.

CMT United Kingdom are delighted to be one of the charities involved and we have a team competing on the day raising money to support individuals affected by Charcot-Marie-Tooth Disease and their families. Spectators are invited as there will be live entertainment, food and drink and activity stalls on site, so why not come and support our team and make a day of it!

If you would like to sponsor our fabulous team, please visit the team JustGiving page: https://www.justgiving.com/planepull2014

To find out more details about the event please visit - http://www.planepull.co.uk/

The 100 Appeal

On the 1st July we launched The 100 Appeal and we have been overwhelmed by the support of people wanting to be part of the appeal. However we are still looking for many more fundraisers to reach 100. The concept is simple - we are looking for 100 fundraisers to raise 100 (or more if you can)!!!

By 100 fundraisers making a team for this appeal, we have the potential of raising Ł10,000 for the charity, which is a huge amount to us and would make a big difference - so why not fundraise for us during our awareness month, September?!!

So why not do something brilliant and be part of 'The 100 Appeal' and make your footprint in the way forward for CMT United Kingdom.

If you are interested in joining the appeal, please call 01202 432048

FUNDING SUPPORT!

I would like to share some fantastic news with all of you:

We have been awarded a Ł3,000 grant from The Freemasons' Grand Charity', this is fantastic for the Charity and I would like to take this opportunity to thank them for supporting CMT United Kingdom and we are truly grateful for their generosity!

We have also been supported by a local business in Bournemouth, Positive Leading, who have chosen CMT United Kingdom as a Charity to support. They have donated Ł1,000 so far with more funds to follow in to September. Thank you very much Positive Leading!

Goodbye......

I am very sorry to say I am leaving CMT United Kingdom. It has been great to get to know some of the members and supporters and I would like to thank you for your support during my term in post. I wish CMT UK all the best in future and it has been a true pleasure being a part of the team and working for such a great cause.

All the best,

Nichola

Help one of our younger members:

Hi, my name is Melissa Haworth. I'm a member of CMT, I have CMT and I'm one of the "CMT Kids". You may have seen me on Facebook, if you're a member of some CMT groups - I am doing an A level where I get to do whatever I want as a project.

I have chosen to work on the psychological effects of having CMT and how can these be helped. I've created an online survey - https://www.surveymonkey.com/s/WXQ6TXN and thank you to all those who have completed it.

I also need to do interviews with people to have a more indepth bit of research. I am looking for about 10-20 people to do these with at a time convenient for them. The questions vary from when you were diagnosed to the benefits of having the condition, but also asking how you may have lived your life differently looking back.

To the end of this project I would like to write a conclusion of the ways as patients we have learnt how to deal with the non-physical symptoms of CMT and rather how we deal with the acceptance and stresses which may occur. Although my project will not be published I would like to create some kind of fact sheet to share if people were interested in it.

So please if you are willing to help you can contact me by mobile 07516140190, email haworthmelissa@hotmail.com or find me on Facebook. Ideally, I need to hear from you as soon as possible

Thank you very much

Melissa Haworth

Top tips for disabled air passengers

The equality and Human Rights Commission has launched a new passort sized guide for disabled people, aimed at making journeys by air as smooth as possible.

The guide contains 15 top tips for a smooth journey, covering areas such as assistance dogs, accessibility, getting mobility and other essential equipment on board and seating arrangments.

You can download the guide from here

New Publication for Newly Diagnosed CMTers

During next week, a new publication will be uploaded to the CMT website - it's called a "A Guide to Living with CMT" - seven top tips, mainly aimed at newly diagnosed people, of all the things we wish we'd know when we were newly diagnosed. This is for FULL MEMBERS ONLY and therefore will be found in the Members Only section of the website. It will also be sent automatically to newly upgraded members.

Isn't that a good excuse to upgrade your membership?

If you don't know the status of your membership, email us and we'll let you know, and you can pay your membership at www.cmt.org.uk/pay-membership.php We're now using PayPal as our card processing provider, so it's a very quick and simple matter to pay, using your PayPal account!

Summer Edition of ComMenT

Full members may have already received our latest edition of ComMenT in the post, and for the rest of you, or for those who choose to get their magazine electronically, the Summer 2014 edition is now uploaded to our website. Log into the Members Area to download your copy, and to get access to all the old editions.

And if you're a Supporter, you can get this edition here!

This edition also came with an order form for the new designs of Christmas Cards for 2014 - I'm sorry to mention Christmas in August, but the cards will be in stock in early September! So if you'd like to order our lovely new designs, check them out here - http://www.cmt.org.uk/catalogue.php?cid=1

We're really sorry that Nichola is leaving us so soon, but she's had an offer that she can't refuse - don't worry, she's not been poached by another charity - but that doesn't mean our big plans for this charity won't happen! We've already started the recruitment process to find a new Fundraising Manager and would hope to have a new person in post by Christmas at the very latest. In the meantime, we'll do our best to support your efforts anyhow!

Karen

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Join our Community at CMT United Kingdom - find out all the benefits of joining at www.cmt.org.uk/benefits-of-joining.php

Contact:

Karen Butcher, Chief Operating Officer
info@cmtuk.org.uk | 01202 432048