"Working to support people affected by Charcot-Marie-Tooth disease"
CMT United Kingdom E-ComMenT
|
|
|
Greetings!
Autumn appears to have come with a vengeance, doesn't it? Brrrr.......!
I can't believe that it's the end of October already - the CMT Kids are off to the Lake District tomorrow for an action-packed weekend of activities - this is a record breaking year, with 27 people going along - all thanks to monies raised by our wonderful members! If you'd like to learn more about the weekend, go to http://www.cmt.org.uk/young_people_weekend.php to learn more. Remember, this weekend is for full members only.
|
Christmas is a-coming...
I can't believe I just typed that......
However, it is true, so don't forget you can get your Christmas cards from us - and unlike most "charity" Christmas cards, we get ALL the profit from them!
This is our current design, at £3.00 for a pack of 10
 But these are available too:
 Reindeer Silhouette is available in limited numbers at just £1 per pack (to clear)  A Child is Born is £2.75 per pack
Merry Christm  as Tree are £3.00 per pack. And don't forget to check out the other goodies we have in the shop - badges, car stickers, pens, mugs, keyturners, pill-pushers - all sorts!
|
|
Join
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.
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!
|
|
Help us continue our work
If you can make a donation, you can use your Paypal account here
|
|
Social Networking
|
|
|
|
|
|
|
Membership
If you are on our members database - either as a full paid up member, or someone who has been a member at some point in the past, or didn't formally join after initially contacting us - you'll either have received, or will receive in the next couple of weeks, a letter from us about some changes to our membership scheme. Basically, it goes like this - we are starting a new system of a two-tier membership scheme - "Supporters" have free membership, can access most of the website for the best information, can attend conferences at full cost and can receive our magazine attached to an email. "Members" pay an annual subscription of £22 for individuals or £27 for families, and have full access to the whole of the website, including the exclusive "members only" section and forum, subsidised attendance at our Conferences, can vote at the AGM, have access to our Young People's events, alert cards for themselves and family members, and ComMenT via download from the website or by post - plus lots more. The idea is that this allows us to stay in touch with everyone who contacts us - currently, if someone doesn't pay their subscription, we "lapse" their membership, which effectively means we lose contact and they no longer hear from us. This new scheme means we will just "downgrade" those members back to "supporters", so that we can still stay in touch, albeit in a more limited way. We feel that it's important to have as many people with CMT in our database - there may be situations in the future where researchers need demographical information on our membership, and we will be able to provide it! (she says, hopefully!) To this end, we are also enclosing a questionnaire with the letter, allowing you to update your contact details and basic details about you. You can also complete it online, if it's easier for you - http://www.surveymonkey.com/s/CMTUpdate2013 Just so we're all clear, any of you reading this (if you're in the UK) can complete this form, and if you're not already on our database - because this email bulletin is available to literally anyone, we will add you to it as a new "Supporter" and you'll get our new Supporter's information pack - OK?? And if you have any concerns or comments about this new scheme, please don't hesitate to get in touch.
|
Don't forget -
Kidz up North
Thursday, 21st November 2013 - 9.30am - 4.30pmat at EventCity, Barton Dock Road, Urmston, Manchester, M17 8AS
|
|
Research
We've just agreed to fund a new project at the MRC Centre for Neuromuscular Disease in London (Mary Reilly's clinic), to the tune of £10,000 per year, for the next three years.
As you may well know, one of the challenges with CMT is that, because it progresses so slowly, it's really difficult to measure change over a short period of time - possibly one of the reasons why the Vitamin C Trial didn't give any positive results (short being, in researcher's terms, less than 2 years). The outcome measures that are available at present are dependent on how the investigator measures muscle strength, the subjective opinions of the patient, and other variable factors.
This project is using MRI scanning of the lower legs to very accurately measure the size of the muscles in the shins, and this gives a very precise, completely objective measure of the deterioration in an individual, and seems to show that deterioration over a very short space of time.
What happens is that fat infiltrates into the muscles as they atrophy, and this fat is measurable. If you're just chubby, the fat remains on the surface - you can see from the middle picture above, a layer of white fat around the outside of the leg. But the critical part in CMT is the fat within the leg muscles - the person on the right hand side has lost almost all their muscle.
The project has been showing fantastic results over the last two years, but Mary and her team want to continue scanning the subjects for another three years to confirm their findings. This is where we come in - each scan costs around £500 to perform, so we're giving the researchers a grant to cover the cost of scans for 20 subjects. Staff costs are already borne by the MRC Centre's funding.
It is hoped that this will give researchers worldwide a very precise way of accurately measuring change, and therefore, being able to assess objectively whether future treatments are working. More details on the project will be published in the next edition of ComMenT.
As always, any donations you may be able to make for research will be much appreciated. This is a special "Research" donation link, if you'd like to contribute - http://bit.ly/1bi9n1D
|
|
Physiotherapy UK 2013
Lisa Welsh and I manned a stand at the International Convention Centre in Birmingham recently, for the Chartered Society of Physiotherapists' Annual Conference
 | Our stand at the Exhibition
|
, giving out information, CD-ROMs, and mints to some of the 1000+ delegates attending. Gita Ramdharry, our Physiotherapy adviser, wrote a brief leaflet giving guidance on the main areas of physiotherapy management specifically for physiotherapists. If you'd like a copy to pass onto your physiotherapist, you can download it from here, or contact the office for a printed copy (or copies!). It was very interesting that the majority of physiotherapists who talked us had heard of CMT, but very few knew that there was a support group. We also talked to a number of student physiotherapists, so it was a great opportunity to indoctrinate the next generation! |
|
|
|
|
|
|
Tha
And that's me done for the day! It's Friday afternoon, I've had the kind of day that makes you want to stick your head in a bucket and drown yourself (technology not playing ball, nothing serious!), and I was up at 5am to pack the kids off the YPW this weekend. I can't cope anymore - I'm off home!!!
Wrap up warm in this horrible weather, and keep your fingers crossed for a reasonable weekend for the CMT Kids in the Lake District this weekend - although I'm reliably informed (by my daughter) that it's more fun in the rain...!
Regards
Karen
Karen Butcher, CMT United Kingdom
0800 652 6316 or text 07790 789008
email: info@cmtuk.org.uk |
|
|
|
|
|
