Family Conference - 5/6 November

That's another event over and done with!  We all had a great time, and I think the 20 or so families who came along all agreed!  Judging by the noise emanating from the kids play area that we'd organised, the kids certainly had fun. 

On Saturday, Stefan Spinty, Consultant Paediatric Neurologist from Alder Hey Hospital spoke to us for most of the afternoon, and gave lots of use information about the management of CMT in children.  There was nothing earth-shattering about his information, but his approach that we, as parents, know what is best for our kids was a very refreshing one!  Whilst he was talking, there was mayhem going on with the kids, with face-painting, crafts, toys, and much more.  Dizzy Lizzy provided a "Build A Bear" workshop, so all the kids went home with new bears, and also did a fun and games session.  

We had a disco after dinner in the evening, and I've proved that it is possible to dance in a mobility scooter!!!  And I didn't kill any small children, so it was all good!  By 10.30pm, there were just a small hardcore of older kids, Karin Rodgers and family and my family - with all the younger ones being taken to bed earlier!

Sunday was filled with more fun and games for the kids, including a hilarious session by Jimbo the Magician.  For the adults, Marion Main, senior physiotherapist from Great Ormond Street Hospital came to talk to us, and again, provided lots and lots of incredibly useful hints and tips.

It was sad to see everyone go home after lunch, and there were certainly several kiddies who were howling, coz they didn't want to go home!  Definitely the mark of a successful event, when no one wants to go home!

There have been lots of requests from delegates for us to do it again next year, but that's something we need to discuss round a committee table.  We heavily subsidised this year's event, and we can't do that every year!  Maybe some mega fundraising could be undertaken....?  Or perhaps it's more sensible if we made this a biannual event.  Watch this space, we'll let you know what we decide.

Young People's Weekend

This also went off very well - pictures speak louder than words, and you can see what the kids got up to if you click on the "View our photos on Flickr" link to the right, and go to the Young People's Weekend 2011 set!  It actually didn't rain all that much - what a miracle!

However, Karin found organising this one rather stressful, due to young people saying they were coming, and then not turning up, or not booking or generally messing her around.  These weekends cost us £300 per head (minimum) and it's such a shame when people don't bother to attend.  That's all that money wasted!  So, like any event we put on - in future, PLEASE make sure you book for your young folk in good time, and then make sure they go!!!!  Thank you - moan over!!!

AWARENESS VIDEO

We recently commissioned a video showing a bit about who we are, and what we do, and it's now available for the world to watch on YouTube!  (yikes!)

The idea is that eventually it'll be on the home page of our website, and also on the resource disks that we give to professionals and such like!

You can watch it here: 

Who are CMT United Kingdom

RESEARCH INFORMATION/ OPPORTUNITIES

We've recently had an e-bulletin from CMTA in the States, regarding the recruiting of participants for research into Type 1a.  Rather than repeating all the information here, you might as well read the email yourself here!  And before you wonder who's paying expenses for you to go to the States, don't worry, the MRC Centre for Neuromuscular Disease in London (Mary Reilly's clinic) is hosting the UK arm of this research.

I've taken part myself, and it's around an hour and half of simple tests, questions and assessment, and does include a limited array of nerve conduction studies.  They're really not that painful, honest!!