Awareness Month is almost at an end, but please do remember - Awareness is a year-round issue, and anything you can do to help is much appreciated. It doesn't have to be being featured in your local newspaper, or magazine - if you can take flyers or posters with you to your regular neurology/physio/orthotic/orthopaedic appointment, and ask them to use them, that makes a big difference.
And if you are seen at a teaching hospital, do ask your Neurologist about being a guinea pig for students. They quite often pay a small amount, too! That's a fantastic way of helping train the next generation of professionals.
On another subject entirely, the Trustees have been pondering whether or not it's time to change the format of our Annual Conferences quite radically, and before we make any sort of decision, one way or another, we'd like YOUR opinion - WHETHER OR NOT you've ever been to an Annual Conference, regardless of your membership status.
When we wrote this a couple of weeks ago, we knew you were a lovely lot, but didn't know how much!!!
Finding a cure or a treatment for all the different kinds of CMT is pretty much like the Holy Grail for most of us, isn't it? Living with an incurable condition isn't the easiest thing in the world. So research is a major priority for us, and indeed for all the CMT organisations around the world.
Since that day, only two weeks ago, we've been flooded with donations - to the tune of over £1,500 - plus a really big one from a Trust (via a member). I'm not going to tell you how much, because we don't want to put you off from continuing to help, but suffice it to say, it was a nice amount.
The upshot is we can now go ahead as planned....
Opportunity Number 1 - Partnering with MDC
We've yet decide finally, but a proposal at present is to donate £10,000 per year to this project. It's not quite half, but a goodly amount that will make a big difference.
Opportunity Number 2 - Balance Pilot study
Alex Williamson and I were able to tell Gita Ramdharry, when we saw her on Saturday, that she's got her money for the Balance project! She was delighted, and will make the necessary arrangements to get the pilot underway. It does take time, but she'll give us regular updates on how it's going.
MRI Scanning Project - continuing as planned.
BUT we still need your help and support.
These three projects will effectively empty the Research Fund. Whilst we don't have any particular problem with this now, of course, this time next year, we'll have more payments to make for the MRI scanning and the research with MDC, so money is still required to get the Fund topped back up, and to enable us to fund any other projects that might surface.
If you can help, click on the link below to make a donation to the Research Fund - or you can send a cheque to the usual address, or text DOSH14 £10 to 70070.
Thank you so much - you're amazing! But remember, we can't do this work without your help.
Fundraising - without the use of money!!!
You don't have to be financially "flush" to make a donation in order to help us with achieving our goals, there are ways to help that won't cost you a penny extra!
If you shop online, you can use an affiliate website - every time you make a purchase, through one of these sites, we get commission.
The easiest to use is www.easyfundraising.org.uk - you sign up and select your preferred charity (us of course!), and if you want you can install a simple tool-bar. Then, every time you go to an online shop that is registered with them, it will prompt you, and you can ask it to make the donation! All the big stores are on there, including Amazon, Play.com, Apple, Boots, Harveys, Harvester, Next, Tesco, and many, many more - over 2700 different companies. And this costs you absolutely nothing!!
Another online method is by using Everyclick - Everyclick.com is a search engine, which donates a small amount to your favourite charity every time you make a web-search. They also have an online shopping portal called Give as you Live, which works in exactly the same way as Easyfundraising, by paying commission on your purchases.
And then, of course, there's recycling:
Check out Charity Ecosystem for recycling old clothing. Go to https://www.charity-ecosystem.org/medical/cmt-united-kingdom.html, sign up and they send you a bag. Once that bag is full (10kgs at least), they collect it from you for free (you choose when) and we get a donation of £4 per bag.
Ask us for an envelope for Inkjet Cartridges - original cartridges can be worth a considerable amount of money. We can also raise funds from your old mobile phones!
And last but not least - although the amounts of money are quite small, we can get money from your used postage stamps. Send them to the office or if you've got a lot, send them, roughly trimmed, direct to the recyclers at:
CMT United Kingdom Used Stamp Appeal Fords Farm HORSEY Norfolk NR29 4EP
Why is it important to join the Patient Contact Registry, which is part of the Rare Diseases Clinical Research Network (RDCRN) at the National Institutes of Health?
Researchers believe that more studies of patients are needed to record progression and symptoms that occur with each specific genetic type of CMT. Understanding the differences between the various types can improve the effectiveness of clinical trials and help the development of targeted treatments.
At the website of Inherited Neuropathies Consortium (INC), which is part of the RDCRN, you can learn about current CMT studies. If you want to stay informed regarding these studies, join the Patient Contact Registry. You will receive research updates and you might be invited to participate in any clinical trials that grow out of the studies.
PS - the website may appear very "American" but they really do need lots more people from outside the US, so do sign up!
Do you know or work with children/ young people with disabilities or special needs?
Are you a professional working in the same field?
Are you a parent or carer supporting a child or young adult with a disability or special need?
If you answered 'yes' to any of these questions then this FREE event is for you! Gain access to over 135 exhibitors offering advice and information on funding for equipment etc, mobility, seating, bathing, transport, sensory, transition, education, communication, legal matters, sports & leisure, fun and features for the children and much more!
Other dates for your diary:-
Kidz in the Middle - 19th March 2015 - Jaguar Exhibition Hall, Ricoh Arena, Coventry.
Kidz South - 4th June 2015 - Rivermead Leisure Complex, Reading.
Kidz Scotland - 17th September 2015 - Highland Hall, Royal Highland Exhibition Centre, Edinburgh.
And I hate to say this.... but don't forget we have Christmas Cards - two new designs - available in our webshop! Check them out at http://www.cmt.org.uk/catalogue.php?&cid=1
The easiest to use is 
