"Working to support people affected by Charcot-Marie-Tooth disease,
 by providing information and funding research"

January Update!
 

I hope you had a great Christmas and New Year, and if you're in Northern England or Scotland, I hope you weren't affected by the horrible flooding.

We have a massive programme of events this year - some for members, some for us! 

We've made a commitment to try to reach as many professionals this year as we can, by attending the Annual Conferences of the Chartered Society of Physiotherapists and the College of Occupational Therapists, attending a new exhibition called "Best Practice" mainly aimed at GPs, and having our information available at the Association of British Neurologists's Annual Conference.  My task now is raising the funds from grant giving Trusts to pay for these things!!!  But I'm going to a training event in London on Thursday this week to learn how to do applications to Trusts well, so as long as I don't fall out of the lift (like I did the last time I went to this particular place!), we should be fine.

As for events to members - everyone should have their letters regarding the Annual Conference by now.  Don't forget - bookings should be made online via the Members area of the website - if you have problems logging in, don't hesitate to ask Yvonne or Kim (enquiries@cmt.org.uk) for help.

The Family Conference is also open for bookings - more information below.

So it'll be a busy year, but should be a productive one!  I'm looking forward to it!

Karen

Raising Money

No, don't worry, I'm not going to ask you for more money - unless you particular want to give it, of course!!

In the future, we're hoping that much our larger scale funding comes from grant giving Trusts - there are over 8000 charities in the UK, who exist to give money to other charities!  Tapping into this resource is an absolute must for the future, but it takes time to do the research and gather the evidence we need to convince them that our cause is better than all the other requests that they must get.

As mentioned before, we'll be going to various conferences, but we need evidence that we really do need to educate these professionals.  You can help with this by completing the survey from the link below. 

https://www.surveymonkey.co.uk/r/CMT-specialists

Thank you so much.  This survey will close at the end of February.

PS - this survey is for people in the UK only - I know this goes to people from all over!
Family Conference

We're in the process of sending out letters to all families with a younger child with CMT, with the essential information you need to book for this fun event!  However, not everyone has given us family information, so we might miss some...

So....

It's over the weekend of 23rd/24th July at the Hilton Hotel, Coventry, and we have Mrs Rachael Hutchinson confirmed as one of the speakers - Rachael is an experienced paediatric orthopaedic surgeon from Norwich, and we're hoping that Dr Stefan Spinty, paediatric neurologist from Alder Hey is also joining us. 

We haven't booked any entertainers as yet - if anyone living in the Midlands can recommend any good magicians or children's entertainers, that would most helpful!  

So if you do have children under 15 (ish), please do think about coming along!  It is a members only event, so if you aren't a member, but would like to come along, pay your membership fees on the website, and then you can book!

The cost is hugely subsidised by a grant from Jeans for Genes, and another grant giving Trust, so it's only £50 for adults, and £10 for children, for full board, from Saturday noon, to Sunday noon!  How can you not come?!
                                           
Research


Over the next few years, as you all know, we are going to try to raise more money than ever before specifically for Research into CMT. 

This research might be funding pure science projects, research into practical issues, surveys - but all of it will be directed by our Research Advisory Board which is being formed at present.  Our Trustee, Anton James, will be Chairing this Board, and it will comprise of both adult and paediatric specialists in as many different specialisms as we can find
.

But what do we need more than anything....yes, of course - money!

Justgiving have a new feature where we can create a Campaign page - individuals fundraising for us can choose to have their efforts go towards the target created for the particular Campaign.

You can check out our Campaign page at http://campaign.justgiving.com/charity/cmt/beat-cmt

There's quite a decent target there, but it should be a realistic one - I hope!
Run a Marathon!

Don't forget - we've got five places in the Great North Run, Great South Run, Great Manchester Run and Great Edinburgh Run, as well as the Edinburgh and Bournemouth Marathon Festivals.

We've also got six places in the British 10K Run in London in July.

Contact Karen at karen@cmtuk.org.uk to find out how to get places!

New Awareness Cards

Gots more of these in stock!  Please do bear in mind, these are not symptom cards, these are basically "adverts" for CMT United Kingdom, to encourage newly diagnosed people to contact us, and hopefully join.  We'll be sending a mailing out to all professionals on our list in the next couple of months with a bundle.

If you would like some to hand to your consultant, physiotherapist or any other kind of medical professional, so that they can hand them out to others, just email us at enquiries@cmt.org.uk and we'll pop some in the post for you. 
Karen Butcher | CMT United Kingdom | 0800 652 6316 | Email | Website
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