I'm emailing from what is supposed to be sunny Bournemouth, but the rain is lashing down, the wind is horrendous and it feels more like winter again... what's going on? Answers on a postcard please!!!
It's lovely and busy down here - lots of things happening down here. Paula Hunter, our PR expert, has been spending a couple of days in the office brainstorming Awareness Month - more on that later. Nichola has been working on lots of different ways of raising all this money we need... again, more from her elsewhere.
And Lisa and I haven't been idle either, keeping everything else ticking over! It's all go, go, go! We're all really excited down here - so many new things seem to be happening! It's keeps us out of mischief!
Karen
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Muscle Groups and Neuromuscular Forums
The Muscular Dystrophy Campaign have received funding from the Department of Health to fund a project called "Bridging the Gap" - a project designed to (in a nutshell) make sure that the needs of everyone with a neuro-muscular condition - which includes us, of course - are not forgotten in the "new" NHS way of working. Nichola and I went to a Neuromuscular Forum in Newbury recently - these are groups of clinicians, commissioners, representatives from some of the other support groups, and lay people, to discuss service provision (and where there are gaps), specialist clinics, and more. They're not for the faint-hearted, because you really need to know your way around the bureaucracy to understand what is going on, but we feel it's essential for CMTers to be represented as often as possible at the Forums around the country. One way that you could become involved, in a more informal way, are through MDC's Muscle Groups, which are also spread around the country. Representatives from various muscle groups make up the "lay" element of the Forum's mentioned above. If there isn't a local CMT group near you, attending a Muscle Group might be a good altern  ative. You can find out more about Muscle Groups, where they are, and who to contact for further information from this link
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Information Days
The Muscular Dystrophy Campaign are also putting on a number of information days around the country - so far we know of two - one in Southampton on 27th June, and the other in Exeteron 3rd June. Nichola and I will be at both.
You can find out more details on our website here
Can you let me know if you're likely to want to come, just so that the organisers get a feel for numbers. It's especially important in Southampton, if you're likely to want disabled parking.
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Awareness Campaigns
 September's Awareness Month campaign would be MUCH better if it could be endorsed by a celebrity! If ANYONE has any link to someone famous, PLEASE PLEASE PLEASE let us know! It would make a huge difference!!
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Planning head for September's
Awareness Month
It might be raining outside as I write this, but it certainly hasn't put a dampener on the office's enthusiasm and creativity for our 2014 Awareness Month planning.
We've had a few ideas for raising awareness of CMT throughout the UK (and hopefully around the world if we manage to pull our social campaign off) ... as well as funds of course!
As always (and this will never change), case studies help us get lots of coverage as journalists like not only to describe what CMT is, but also bring it to life by using a case study of someone who has it.
We've had some great CMT stories covered over the last few years and our members and supporters have featured heavily in the press and on the radio because they were willing to share their experiences with journalists. Understandably, however, the majority of press don't want to cover the same story year after year so we're always looking for new people who would be happy to help us out.
What we've decided to do this year is start from scratch with a Survey Monkey form to fill in. So even if you've filled it in once before, but are willing to take part again, please click on this link and do it again. Or if you've never done it before and this year would like to bite the bullet, pass on your details by filling our form in. For a wide variety of reasons, not everybody will be used, but the majority will, and it's always better to have too many people to choose from than too little.
We've also decided to start our own 'selfie' campaign this year and will need your help. Don't do it early though as we really want to make a big hit on Monday 1 September!
What we intend to do is get as many people as possible to take a selfie with another member of their family - mothers/daughter or sons, uncles/nieces, brothers/sisters etc. - linking your little fingers. We want you to then post your selfie on Facebook with the hashtag #togetherwearestronger. Linking little fingers will be used to show how the condition is genetic and can be inherited. We hope to raise funds as well as awareness by giving people a number they can text a donation to. Wouldn't it be great if we can get it to spread and be a success like the Cancer Research UK campaign?
Our new fundraiser, Nichola, is also gearing up here for 'The 100 Appeal' campaign, which is designed to encourage us all to raise £100 through a variety of activities. Obviously, if you raise more, even better! Nichola is currently putting ideas together and an activity pack will ready to download or be posted out at the beginning of July.
 Finally, it's likely we'll undertake another survey nearer September and use the results to give us a few angles to launch our campaign. Some questions will be light hearted and others more serious questions about your experiences with CMT. We would like to get around 1,000 replies to give our results greater credibility to please consider helping us with this nearer the time.
We had a fantastic brainstorm yesterday and there are lots of other ideas in the mix too ... so watch this space.
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Membership I've just been processing upcoming direct debit payments and THANK YOU to everyone who now pays their subscription by Direct Debit - over half the paying membership now do this, and it's really noticeable in the reducing numbers of envelopes to stuff each month. If you'd like to pay by direct debit in the future, you can access a form here (even if your sub isn't due yet) and we process it for you, to pay on the right date. You can also pay monthly if you prefer - just write MONTHLY on the top of the form, and we'll make sure that happens. It also occurred to me that we could be possibly gaining LOTS of extra income from subscriptions if everyone who was eligible "gift aided" their subscription. I suspect this is because you may not be aware of what Gift Aid is. So here goes.... Gift Aid is a simple way to increase the value of your gift to CMT United Kingdom- at no extra cost to you. If you pay tax in the UK, we can reclaim the basic rate tax (25%) on your gift. So, if you donate £100, it is worth £125 to CMT United Kingdom. -
Do I qualify for Gift Aid?
In order for CMT United Kingdom to reclaim the tax you have paid on your donations, you must have paid income or capital gains tax (in the UK) for each tax year (6 April to 5 April) at least equal to the tax that all the charities or Community Amateur Sports Clubs that you donate to will reclaim on your gifts for that tax year. Other taxes such as VAT and Council Tax do not qualify.
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How do I sign up to Gift Aid?
The process is simple - all you have to do is make a Gift Aid declaration. All you have to do is complete this form and we tick the relevant box on our database! Or you can phone us and make a verbal declaration, or just email and say - "please treat all my donations and subscriptions as gift aid donations".
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What does the Gift Aid declaration commit me to?
Nothing! It just ensures that if you choose to donate to CMT United Kingdom, we can claim an extra 25% back from the government.
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What is a Gift Aid declaration?
A Gift Aid declaration is a statement by an individual taxpayer that they want a charity to receive the tax paid on their donation back from the government.
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How long does the declaration last for?
To simplify matters for both you and CMT United Kingdom, the declaration wording normally covers present, future and past donations. We can back-claim four years and we will continue to claim until you tell us otherwise, so long as you are eligible.
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What do I do if I my tax status changes or I want to cancel my declaration?
To let us know if you stop paying tax or wish to cancel your declaration, please email or phone on the usual numbers.
So what are you waiting for? Contact us if you need any more information, or if you'd like to check if you have a declaration already in place. REMEMBER - THIS COSTS YOU NOTHING!! Bargain! |
Website Updates
Our website has had a mini make-over with new scrollers on the home page, giving it a slightly better look - and making them easier to update! We've also updated the News Page (on the Members tab) so you can catch up with some publicity that we've had already during 2014 and updated some of the pages in the CMT Youth section. But mainly, I HAVE to draw your attention to a fab new video that CMT Kid, Sophie Arnold, filmed for us at the recent "Big Kids" Event back in March.... It's just amazing and really shows how important (and fun) these events are to our CMT Kids. You can access it via the website or click on the image below! We'd love to know what you think!  | | CMT Big Kids Weekend 2014 |
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Message from Nichola....
Awareness Month - SEPTEMBER We have been talking and planning about awareness month recently and we would like as many of you as possible to get involved. Awareness month is very important to raise exposure of CMT and there will be many different activities planned throughout September to get involved in. There is a fantastic opportunity to take part in the London to Brighton Challenge on 7th September - cycling 54 miles in aid of CMT United Kingdom. We are looking for a total of 10 participants in order to book spaces, therefore please get in touch with me if you are interested!!! nichola@cmtuk.org.uk
Why not help raise awareness by holding your own Cake, Muffin and Tea Party with friends, family or colleagues. We can provide a FREE pack to help your party go with a bang! The pack includes posters, invitations, bunting plus lots, lots more!!! This is a great way to socialise and get together whilst supporting our cause. You can either download the pack from our website http://www.cmt.org.uk/Teaparty.php or contact us on 01202 432048. Additionally there are many other ways you can support us this awareness month and here are some suggestions: - Take part in a challenge event during September
- Arrange your own fundraising event - if you need help contact me!
- Purchase an awareness kit from our website that include posters/ leaflets/ wrist band/ collection box and much more!
- Become a Member of CMT United Kingdom
- Make a pledge and set up monthly giving to CMT United Kingdom
- Hold a dress down day at school
There are so many ways you can help raise awareness whilst having fun - please support our awareness month this September as TOGETHER WE ARE STRONGER! Fundraising News: I would like to take this opportunity to highlight some FANTASTIC fundraisers this month! Well done to Nancy Nelson & Karen Kerr who tackled the Glasgow 10km Bupa Great Run on Sunday 11th May to raise funds for CMT United Kingdom. They completed the challenge in 1 hour and have raised over a whopping £1,300 for our work. Thank you both for choosing to support us and congratulations on completing it in a PB. |
So, a really long, bumper edition of E-ComMenT this month.
Hope you enjoy it! And don't forget, we're still waiting for all our lovely Supporters out there to upgrade to Full members and help us do even more!
Karen
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 Click here to make donation using your PayPal account, and help us achieve our dreams
Join our Community at CMT United Kingdom So what are the benefits of joining us? Supporters get: - Three editions of our magazine. ComMenT, per year attached to an email like this one
- 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
MEMBERS GET ALL THAT PLUS.... - Access to our members only section of the CMT website with its huge library of publications and the Members' Forum
- Alert cards for yourself and close family members
- Discounted attendance at our Annual Conference - next one on 5th April at the Hilton Hotel, Swindon, Wiltshire. And you get the right to vote at the Annual General Meeting.
- ComMenT by post (if preferred), and access to 10 year's worth of back-numbers.
And all this for only £22per year, or £27 for families! |
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Contact:
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Karen Butcher, Chief Operating Officer
info@cmtuk.org.uk | 01202 432048
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