"Working to support people affected by Charcot-Marie-Tooth disease"
CMT United Kingdom E-ComMenT
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Greetings!
There seems to be recurring theme in my introductory bit to E-ComMenT - nearly forgot this month, nearly forgot that.... well, April did get missed entirely! I'm really sorry, but it was a bit of a manic month, in my defence. Started with Easter, then I escaped to Cornwall for a week's holiday, then the Conference, and then a quick trip to Amsterdam for a scientific meeting...! More about those further down.
I hope you are all enjoying the little bit of sun that we're having/have had! Keep everything crossed for a better summer this year!
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Annual Conference
Well, another Conference is done and dusted, up in Runcorn, Cheshire in April - the organisation's 25th!
I won't b ore you with all the details here, because the next edition of the magazine will feature detailed reports, but we'd like to thank Mary Reilly for giving her usual amazing talk and for hosting workshops as well.
Richard Ouston became Chairman, replacing Lisa Welsh, who had done a stirling job as Chair for the past five years. Richard is particularly interested in translating our exciting plans into reality, so if anyone has any comments, or suggestions, I'm sure he would be very pleased to hear from you - you can email him on richard@cmtuk.org.uk.
There are going to be some changes to the Constitution over next year - mainly to do with the number of Trustees we can have on the Board, and bringing in a maximum term that people can serve - currently, it's unlimited, but it's better for the organisation to have a turnover of personalities and skills, so in future the maximum people can serve will be two terms of three years. If you have any particular skills that you think we might benefit from - and fundraising and marketing/publicity are just two useful ones, please do get in touch. If becoming a trustee isn't your cup of tea, we are also intending to start a number of smaller sub-committees focussing on these subjects over the next few months, and these would require far less commitment on your part. So if you would be interesting in helping out, please do get in touch - either with myself or with Richard.
If you want to see more pictures from the Conference, just click on the Flickr link further down this email and choose the set "Conference 2013".
And the date for next year's Conference is 12th April 2014 at the Hilton Hotel, Swindon (just off junction 16 of the M4).
We have no idea who will be speaking yet - it's all a mystery! Does anyone have any suggestions?? And if you're really enthusiastic - you can book now! Download a booking form from here and get a bit of a discount on the day delegate rate! The rooms are more expensive than this year, I'm afraid - but do check out websites like www.booking.com - sometimes they give excellent prices, especially this far in advance.
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Coin Boxes
We'll be despatching these lovely loose change boxes to you during the next month or two. Please do make good use of them, and if you want more than one, please let me know!
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Myelin Masquerade Ball
Still lots of tickets available for this great fundraising event! You know you want an excuse to buy some new clothes, make a fool of yourself with a mask, and generally have a fabulous time! And, the best part - you don't have to worry about the shoes to go with the outfit, since as we're all in the same boat, it doesn't matter.
AND, you can help us raise lots of money for us too. What could be better!! Just ask us for a booking form!
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Marathons
Thanks to everyone who has been taking part in Marathons and such like for us recently - some guys ran the Brighton Marathon, Ben Allen ran the London Marathon, and we have a guy taking part in the Lanzarote Iron Man competition later this month, to name just a few! The next one that has places available, where we have guarantee places available is the Bournemouth Marathon Festival at the beginning of October. Find out all about the options available to you at http://www.run-bmf.com/?charity-information&charities_id=806 - and we'll be there to cheer you on!
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Easy Fundraising
We've signed up with a couple of new fundraising websites recently. Firstly, www.ploink.co.uk allows you to set up a regular "small" donation to us, by "ploinkng" your small change. Check it out!  And you can also donate your clothes to us, too - go to https://www.charity-ecosystem.org/medical/cmt-united-kingdom.html and request a bag for your old clothes. Once it's full, you go back online and request a collection. We get £4 per bag, and more if you're eligible for gift aid. Last but not least, we can also now recycle any unwanted jewellery - doesn't have to be the crown jewels, but even old costume jewellery has a value. We have envelopes in the office, so request one from us, and we'll post it out to you.
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Research
As you've been hearing, our ultimate aim is to raise sufficient funds to be able to offer grant-funding to researchers directly, without having to use the Muscular Dystrophy Campaign as the "middle man". Clinical trials are incredibly expensive, requiring anything between £200K and £500K (a conservative estimate), so as always, your contributions towards our Research Fund are hugely valued. But even without our financial input, research is going on apace around the world. I recently attended a workshop funded by the European NeuroMuscular Consortium in the Netherlands, which was talking about "mitochondrial fission and fusion" - no, I didn't understand what it was all about either! Basically, CMT Type 2A is caused by a protein called Mitofusin2, which is involved in the mitochondria (or power house) of the cells. Whilst I had no idea what they were talking about, the purpose of my being there, of course, is to remind these basic scientists that they are not just  dealing with the inside of a test-tube or the result of some DNA sequencing, but with real people, with real diseases that cause a huge problem in their lives. It was mind boggling, but fascinating to learn just how much is NOT yet known about the inner workings of cells. These researchers shown (and yes, Mary Reilly is at the front in the pink top, and I'm just behind her to the right) were from all over the States and Europe.
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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 12th April at the Hilton Hotel, Swindon, Wiltshire.
And all this for only £22per year, or £27 for families! (New rates as from 1st October 2012) You can also now pay monthly by direct debit.
Join at www.cmt.org.uk - if you sign up for an direct debit, you can even have the first year free!
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Help us continue our work
If you can make a donation, you can use your Paypal account here
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Social Networking
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Measuring Impact
It's very important when we're making a case for funds from donors that we know that what we're doing makes an impact on you, our members.
I know we've surveyed you recently about this, but this survey goes into a little more detail about your feelings towards us!
If you'd like to complete it, we would much appreciate it.
http://www.surveymonkey.com/s/improvingcmtuk
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So, I think that's about it for this month, no doubt I've forgotten something I should have mentioned, but it's too late now!! If you need anything from us, you know where we are - any of the Trustees (listed on the back of ComMenT) are all happy to hear from you - it doesn't have to be just us here in the office!
Regards
Karen
Karen Butcher, CMT United Kingdom
0800 652 6316 or text 07790 789008
email: info@cmtuk.org.uk |
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