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The national support group for people with Charcot-Marie-Tooth
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CMT United Kingdom E-ComMenT
Greetings!
Another action packed E-ComMenT for you here...
Do think about supporting Anthony Brown's mega Bike Ride from Cambridge to Paris, if you can - or perhaps we can let you know his route, and you can wave!!
I should also mention the Charity Dinner held at Marco Pierre White's Restaurant in Sussex - apparently a fabulous time was had by all attending, and we'll be receiving all the proceeds of the Auction - some £3500, plus the proceeds from wine sales on the evening, in due course. Many thanks to Rebecca Brooks-Weir and her daughter, Georgia, for making contact with Marco in the first place, and getting this ball rolling. Apparently this dinner is set to become an annual event!
I'm off to Washington DC next week (27th June) to attend the CMT Consortium meeting - a gathering of researchers on CMT from all over the world! Wish me luck - if I understand more than 1 word in 10 of the lectures, I'll be very pleased! So if there is no reply in the office next week, you'll know why. I'm back on Monday 4th July, so normal service will be resumed on the 5th (allowing for the jetlag!).
Karen
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Family Conference
This is now BOOKED for Saturday 5th November til Sunday 6th November. Registration will open from 11am, lunch will be at 12noon, followed by speakers/entertainers during the afternoon. We'll eat together in the evening, and a disco is being provided free by the hotel. Sunday will continue with more speakers and entertainment - and our regular childminder, Alison, will be supervising a play area for the kids on both days. We'll finish with a buffet lunch.
And the cost for all this fun - just £50 per head for adults and £10 for each child. That's a massive subsidy of over £300 per family!
The age range for the kids is loosely up to 12-ish - but we won't be turning anyone away if they're a bit over that!! BUT we are limiting numbers to 120, and the hotel only have 26 family rooms, which can sleep up to five in a double/twin adjoining room (with a put-you-up or cot for the fifth) .... SO - if you'd like to come - PLEASE let me know as soon as possible, so that we can send out forms just as soon as I've done them! Families of three can be accommodated in double rooms, and there are, of course, twins for families of two! Food will be as child-friendly as possible!!
Should be good fun! |
Young People's Weekend
This will held at Bendrigg Lodge, Kendal over the weekend of 28th - 31st October. Cost per kid will be £45, and the age range is 12 - 20 (ish).
For more information about Bendrigg, go to www.bendrigg.org.uk
Please contact Karin Rodgers on karin@cmtuk.org.uk to reserve your place, and we'll send the booking forms as soon as they're completed.
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CMT: On Your Bike
On September 20th I will be setting off on a four day cycle ride from Cambridge (home of Howard Tooth) to London (where Tooth worked) and onto Paris (home of Charcot and Marie) to raise funds for CMT United Kingdom's Young People's events. Travelling for 350 miles, including over the challenging North Downs and rising into central France, the route will take in approximately 6000 meters of vertical climbing, or the equivalent of riding a bicycle three quarters of the way up Mount Everest!
Helping to motivate and encourage me over the hills, and to maintain a suitable sense of humour, will be fellow cyclists Martin Willitts, a Cambridge friend, and Steven Ramsay, my brother-in-law. Driving our clothes, tools and other supplies between stops, & providing valuable moral support will be my brother Matt Dettmar, a fellow CMTer, & friend Nic Dent.
The spirit of this journey is one of endurance, physical activity, targets, achievement and new experiences. Reflecting that spirit, and because I feel passionately that outdoor activities, challenges and achievement are valuable to everyone, I will be raising money to support CMT United Kingdom's Young People's Events. These f
abulous weekends give teenagers with CMT the opportunity to try new activities amongst the support of other kids with CMT.
To support and help young people with CMT enjoy new activities and experiences, please encourage as many people as you can to sponsor me at www.justgiving.com/CMTOnYourBike.
Anthony Brown
Cambridge
If you'd like to catch up with Anthony and cheer him on along the way, please email Karen with your name, telephone number and email and I'll pass them onto him - I'm sure he'd appreciate the encouragement!
Thank you
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Services for members
I am in the process of setting up a business, helping people make wills, and with property services. My website is
www.asimplewayto.co.uk
I am offering my services to members, with a donation being made to CMT United Kingdom for every completed will, and in respect of other property services 1% of any fees obtained. Members just need to contact me through my website and quote "CMT UK" and then I'll know where the donation should go!
Kind regards
Beverley Harrison
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Thanks
must go to a certain couple in Blackpool, who prefer to remain nameless, who read of our problems with our sound system in the last e-ComMenT, and have donated £2,200 to us to enable us to purchase a better, more professional set up to allow us to ensure that you can all see and hear properly at the next Conference!
We salute you!!
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Donate via TEXT message!
We've just signed up with a new free service provided by Justgiving, which allows you to donate to us via your mobile phone! All you do is text to 70070, followed by:
- CMTK01 and the amount, if you want to make a donation to our general running costs
- CMTK02 and the amount, to make a donation to the CMT Kids fund
- CMTK03 and the amount, to make a donation to our Research fund.
It's as simple as that, and we receive 100% of the donation! Why not give it a try?! |
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Awareness Month is creeping up on us, and we've got something new for you to be involved in this year.....how do you fancy holding a C-ake, M-uffin and T-ea Party in aid of CMT United Kingdom? These will be along the lines of the MacMillan or Marie Curie Tea Parties, where you can invite anything from
3 to 300 people (or more!) to your home, or a venue of your choice, to partake of a cuppa and a cake! Not only does this raise some money for us - more importantly, it'll be spreading awareness to those attending.
We're in the process of finalising all the resources to help you with this, from invites and a comprehensive guide helping you with the arrangements, to bunting to cut out and make, to balloons and games to help raise more funds.... If you're up for the challenge, email me at the usual address and ask for a pack. We will be mailing ALL members during early July with all the details, and with a form to request a pack.
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Last but not least.....
Congratulations to Trustees, Richard and Jeeta who were married at the Hilton Hotel, Strathclyde on Saturday. Jeeta had a major operation on her knee at the end of April, but still walked down the aisle beautifully (with walking sticks decorated to match the sari)! We all had a fabulous day, and we wish them all lots of luck for the future. And good luck to Jeeta's daughter, Suki - who was also a Trustee - she starts her new life in Toronto today! |
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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 in April 2011 at the Hilton Hotel, Coventry.
Access to our freephone helpline !
And all this for only £20 per year, or £25 for families! (prices for renewals from 1st October 2010)
Join at www.cmt.org.uk - membership is free for the first year for new members! |
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There was an error in the last newsletter - Marina Brocca represented AICMT. our counterparts in Italy, at the Convention and I promised to make sure I put it right this time!
Lots of news from DC in the next edition!
Regards
Karen
Karen Butcher, CMT United Kingdom
0800 652 6316 |
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