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The national support group for people with Charcot-Marie-Tooth
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CMT United Kingdom E-ComMenT
Greetings!
Well, another Conference is over and done with - I thought it went very well, overall - there were the usual hiccups, I suppose, but we're all human, after all!
After every conference, there are always evaluation forms for delegates to complete, and we would like to reassure everyone that we really do take notice of each and every one. So much so, in fact, that based on a few comments on the lines of "isn't it time to find a new venue", we are actively doing just that. However, it's not a simple matter - there are many elements to consider, from the size of the room to accommodate up to 200 "cabaret style" (round tables), to accessibility, size of bedrooms, and last but not least, cost! We don't want to move and lumber you with double the cost! So, whilst we are trying, and do have some interesting possibilities to visit - if we DO end up back at the Hilton, I can promise you, it won't be for the lack of trying to find somewhere else.
Onto other things - I must apologise to those of you who receive ComMenT via the website - I've only just uploaded the Spring 2012 edition, I'm afraid - it should have been done about four weeks ago, but .... I dunno, I was distracted by something else - oh yeah, the Conference. Anyhow, if you have signed up to receive your magazine electronically, you can now access it at www.cmt.org.uk/ComMenT_Archive.php.
Hope you enjoy it! Don't forget you need to sign into the Members Zone with your email address and password to access it.
Karen
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Annual Conference Survey
Further to the evaluation forms that we receive from delegates, we are also very interested in why people DON'T attend the Conference. Numbers were down this year, and we're wondering why - I have a sneaky feeling it might be down to the cost of petrol, coz I'm sure that would put me off!!
So, we'd be very grateful if you could complete this short survey - WHETHER OR NOT you've been to a Conference either recently or in the dim and distant past.
We'll publish the results in a future edition of E-ComMenT.
In addition, if you would like to read the full Evaluation Report from the 2012 Conference (anonymised!), you can read it here - www.cmt.org.uk/annual-conference.php - you can also see some of the hotels we are considering here, too.
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Calling people with Type 2 CMT
Oxbridge Roundtable Solutions (ORS) is currently undertaking research to understand how patients suffering from rare diseases are diagnosed and treated. This includes people affected by the Charcot-Marie-Tooth disease (type 2C in particular).
We are deeply interested in hearing from people affected by this condition, as well as their caretakers or close relatives. Therefore, we prepared a short online questionnaire that can be found at the following address:
http://www.surveybuilder.com/s/JabXUelUIAA
First-hand experience in dealing with the disease and its impact on the patients' and their families' lives will undoubtedly give an invaluable contribution to our study. Please note that this survey is anonymous, voluntary and confidential. We do not ask and we do not collect any personal details of patients (such as name, address or any contact details).
Oxbridge Roundtable Solutions (ORS) is the consulting branch of the Oxbridge Biotech Roundtable (OBR), based in London, and is a not for profit organization of academic researchers and professionals in the Biotechnology industry. This project will genuinely contribute in guiding a drug-developer in identifying unmet needs in the orphan drug market, which they have the capacity to address.
For further information, please contact ORS OBR, obr.rare.diseases@gmail.com
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YOUNG PEOPLE'S WEEKEND 2012
Don't forget you can book NOW for the next YPW event at Bendrigg Lodge, Kendal on 26th-29th October. Email Karin at karin@cmtuk.org.uk for further information. The lower age limit is 12 and the cost will be £45. You can download forms and information at http://www.cmt.org.uk/ypw-events.php.
If you'd prefer me to send you forms in the post, just email or phone and I can do that, without any problem. We also have a small fund, kindly provided by a member, to assist with travelling expenses - please do ask us about how we might be able to help with this.
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There is still ONE place to be had on the Jubilee Sailing Trust Day Trip from Southampton, too - thanks to my daughter deciding she'd rather be in New York on that date! Contact Karen for all the relevant forms if you'd like to take the place
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Scottish Conference
For everyone north of the border (and south if you want to!), we'll be hosting a Regional Conference in Scotland - at the Hilton Hotel, Strathclyde on Saturday 15th September. So far, we have an Orthopaedic Surgeon, a Rehabilitation Consultant and an Orthotist booked to speak, so it should be a great day!
It's also a great opportunity to meet all the Trustees, and meet and socialise with each other - that's just as important as the speakers, I think.
To book early and reserve your place, click here to download a booking form.
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Awareness Month
Paula Hunter, our PR consultant, still needs lots of case studies for Awareness Month in September. She particularly needs women between the ages of 18 and 45 (all over the UK) and young men between 18 and 30.
If you can help, please complete aCase Study form and post it back to me as soon as possible. If you'd like it as a Word document, so you can complete it on your computer, please email me, as I can only upload .pdf's to this newsletter |
Justgiving Pages
Don't forget, there are loads and loads of wonderful people out there doing crazy and inspiring challenges for us to raise funds and awareness - if you can support them in any way, I know they'd be most grateful.
Thanks in particular go to Sam Lewis - her family is running the British 10K run for us in July, along with Jackie Bye; don't forget Claude Mac Trevor, the travelling dinosaur - he's off to California soon, lucky thing; Sue Ward is turning - well, it's a milestone birthday, shall we say - on 29th June (same milestone and same date as our Chair, Lisa) and wants donations in lieu of presents - Sue also has a travelling Ted raising Awareness for CMT - search Ted's Travels on Facebook. So far Ted is off to around 90 locations around the world, I believe. And of course, don't forget Nigel Holland, who you may have seen on The One Show in February - www.the50list.co.uk - he's raising lots of funds too. One of Nigel's challenges was to write a book, and I was delighted to hear that "The 50 List" will be published in March of next year.
Thank you to EVERYONE who raises funds and awareness for us - we appreciate every penny.
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 Awareness Month
Going back to Awareness Month, we'll be collaborating with our friends around the world as usual, and Global Awareness Day has been set for Friday 28th September. One idea that CMTA has for spreading awareness is getting a phrase or sentence that encapsulates what we're trying to do translated into as many languages as we possibly can. What do you think this sentence ought to be? What, for you, would spread the word on a succinct way? Ideas on a postcard please - or better still, by email, it's cheaper!
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 SUBSCRIPTIONS
An increase in the rate of Annual Subscription was approved by the members at the recent Annual General Meeting and from 1st October 2012, the individual membership will increase to £22 per year, and for families, it will increase to £27 per year.
We do regret this increase in tough economic times, but our costs are ever increasing, too. Remember, though, if you do have difficulty with the amount, please let us know before binning or ignoring the renewal forms - we may be able to help. The last thing we want to do is lose members because you haven't communicated with us!!
You can also help us decrease, eventually, the costs of processing subscriptions, by completing a Direct Debit mandate - you can do this at any time, and we'll just ensure that it starts when your subscription is next due. Download a Direct Debit Mandate here - again, this is also a great way of ensuring your membership NEVER lapses!!
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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 21st April 2012 at the Hilton Hotel, Coventry.
And all this for only £20 per year, or £25 for families!
Join at www.cmt.org.uk - membership is free for the first year for new members! |
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Last but not least, we've learned that the daughter of one of our members - who has CMT - has been chosen to carry the Olympic Torch through Ludlow on 24th May. If you're in that area, please go along to cheer Chloe on!
I think I've included everything that I need to mention this time - virtually every E-ComMenT, I click "send" ... and then find something else that I should have included! Don't forget, if you have something you'd like to share with the membership, please let us know - that goes for the printed copy of ComMenT as well as the E-ComMenT. Contributions to the magazine should be emailed direct to the Editor, Clive at clive@cmtuk.org.uk
See you there!!
Regards
Karen
Karen Butcher, CMT United Kingdom
0800 652 6316 |
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