We had some interesting comments and ideas from the survey we published last time.

You were all pretty much OK with our mission statement

"Working to support people affected by Charcot-Marie-Tooth disease, also known as.... (blah blah)"   Someone did say - but it doesn't say what that is for the general public... that's true, but a strapline is, by it's nature, brief, and how much can you get over in a sentence.  If you have any ideas, we'd like to hear them!

As to the question of our priorities - there were no surprises there..
Research and Awareness, with awareness within the medical profession being higher priority than with the general public.  We'll be working on that in February, when we're having a meeting with our medical advisers.  We'll also be discussing what we can do with the research monies that we now have accumulated, to ensure it's used to best advantage. 
 
Your next favourite priority was improvement to our advice and information services.  We do try, year on year, to improve our services and will continue to do so, funding permitting.  Our major push for funds this year will to raise funds to revamp our book "CMT: A Practical Guide", from which we'll also be able to update other publications.   We did have a couple of negative comments about emails and messages not being answered - we do respond to every email received (I've done nothing else for the last four hours in the office today!) and try to respond to all voice mails, but since we are limited to the amount of hours that there are staff in the office, it's difficult to provide as much personal support as you might like.  We'll keep trying to improve, but with two members of staff only working 15-16 hours each per week, it's not easy!

As for the personal stories you've shared - thank you!  Thanks for the kind words, they're much appreciated!