"Working to support people affected by Charcot-Marie-Tooth disease"
CMT United Kingdom E-ComMenT
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Greetings!
In January's e-ComMenT, I mentioned I nearly forgot that one... well, did you notice the lack of the February update? But in my defence, February was a very busy month, with two meetings with the Trustees and much more besides!
I wonder if we will get a nice Spring - today, it's wet, grey and miserable down here in Bournemouth!
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Fundraising
We had an amazing meeting with a professional fundraiser at the beginning of February, where he took us Trustees by the scruff of the neck, and gave us a good shake... just what we needed, really, since it's awfully easy to get too comfortable and complacent, when you've been doing the same thing for many years.
The upshot is we are setting ourselves some major targets for fundraising, so that WE can direct and pay for much more research (rather than relying on other organis ations) and also that we can really improve and enhance our welfare and support services for everyone!
So.... wait for it.... we are committing ourselves to raising £2,000,000 in the next few years - yes, that does have six zeroes after it!
We are aware, though, that there is no way that we can ask you, our members, to raise that! Some of it, yes, definitely - but we've got to go much further than our members. Companies, Trusts and Foundations, and even direct mail to "cold" contacts are all angles that we'll be exploring. If you have any ideas as to where we can ask for money - especially with regards to companies - please, please let us know.
One thing that we will be distributing amongst our members (probably during the summer), though, will be cardboard "change" boxes - somewhere to stash your small change to donate to us. It's a little thing that might have big results! They'll be available from mid April, so if you want one as soon as they're ready, just ask!
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Annual Conference
Don't forget - you've got until Friday 5th April to book your place at our Annual Conference! We're waiting for your booking forms! If you need a form, you can either download one from the website, or ask us nicely, although you should all have had them by now!
(Don't be put off by the steps, there is a ramped entrance!)
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Myelin Masquerade Ball
Come on! 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
 | | This is eight of our runners for the Half Marathon. Thanks guys, you were great! |
The Brighton Half Marathon went well, with the total raised so far topping £4,300 (or thereabouts!) It was bloomin' freezing on Brighton sea front, but I'm told, in the sunshine, it was almost too warm for running. Thank you so much to all those who took part!
Don't forget, places are also available in the Bournemouth and Edinburgh Marathon Festivals. Go to http://www.edinburgh-marathon.com/ or http://www.run-bmf.com/ to find out about registering and all the other information you might need. And if you'd like to support any of our amazing fundraisers, go to www.justgiving.com/cmt to find out what people are doing, and if you can, make a donation!
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Research
We've also had an amazing meeting with Professor Mary Reilly and a number of our other medical advisers, to give us an update into research, and other interventions that help, so that we can always give you the best possible information. There is nothing hugely impressive to report on the Research front, because CMT is so difficult to measure - until outcome measures can be developed that are sensitive to detect change over a relatively short period of time, trials might not show any benefits. MRI scanning is an exciting development that might just do the trick, but there is still a lot to be learned.
What was wonderful about the whole meeting is the commitment to the CMT cause from these professionals - there were neurologists, researchers, orthopaedic surgeons, orthotists and physiotherapists present. So whilst good care may still be patchy, it is improving! We also discussed how we can improve knowledge amongst GPs and other professionals, and will be working on various strategies with them in the future.
We will also be attending a number of scientific meetings this year too - I shall be attending the Neuromuscular Translational Research Conference in Oxford on 15th March, I've been invited to another workshop in the Netherlands in April about one of the rarer Type 2 CMTs (all expenses paid by the organisers!), and some of us will also be attending the International CMT Consortium meeting in Antwerp in June. Lots of learn and lots to take in!
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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 20th April 2013 at the Holiday Inn, Runcorn, Cheshire.
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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On a personal note, one thing that came out of our meeting with the fundraiser, was the possibility of conflict of interest now that I'm being paid but remainng as a Trustee. So the easiest thing to do was to resign and I am now just an employee, but in practical terms, it really doesn't make any difference. So that means, if anyone is interested in standing as a Trustee, we do have a vacancy - in fact, Amanda Haylock has also decided to step down this year, due to various personal commitments. So there are two vacancies from the AGM at the Conference.
We REALLY need people with fundraising and PR/Marketing experience on the Board, so please do think about joining the Trustees! It's going to be an exciting few years - why not come along for the ride?! If you want any more information about the workload, the application process and anything else, please just contact me.
Regards
Karen
Karen Butcher, CMT United Kingdom
0800 652 6316 or text 07562 700398
email: info@cmtuk.org.uk |
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