July  2015


In the last email, I mentioned April going by in a blur.... well, June was even worse and here we are in July, and I'm only just sending out the next update! 

You might have read on our website, or on Facebook, that we had to part company with George Brown - a sorry tale, and not something to dwell on, actually, but that's life, I guess!   Anyhow, the upshot is that I'm going to be taking over the primary role of fundraising, and passing the admin tasks I do onto a new member of staff, who hopefully will be in place by the beginning of August at the latest.  We've had LOADS of applications, so that's going to be fun, sifting through those!

I don't profess to be hugely experienced in fundraising as such, but dealing with our community fundraisers and existing donors is something I've been doing for many years - it's just part of the job - but fortunately, there are oodles of courses out there to learn the more complicated stuff (like making applications to Trusts and Foundations) so I'll be undertaking those in due course.

What we will be doing over the coming months is asking YOUR opinion on what you would like us to be providing, services-wise.  There's no point in asking for money for x, y or z, if you want a, b and c!!  So keep your eyes peeled for lots of short surveys heading your way!

So it's all change here - again.  It's a challenge I'm looking forward to!


Online Training Module for GPs

Don't forget to keep mentioning this online training module to your GP.  It's a great resource and we must make maximum use of! 


We've created a flyer for you to give your GP, which you can download here - that's an A4 (4 page) flyer that you can easily print, but if you'd like copies of an A5 folded flyer to give to them, just email me.


You can find more information (and get the link) about the GP eLearning module here at our website - http://cmt.org.uk/professionals/    



Family Conference

As mentioned last time, thanks to a grant from Jeans for Jeans, we're able to organise another Family Conference.

The dates are 23th/24th July, 2016 and it'll be held at the Hilton Hotel, Coventry.

Booking is now open (although the programme hasn't yet been fixed!).  This is a MEMBERS ONLY event, so if you want to come along, log into the members area of the website and navigate to Events, you'll find the link to the Eventbrite bookings and other information there too.  And if you're not a member, and want to come - you'll have to upgrade your membership!

Due to the generosity of Jeans for Genes and another Trust, this event is HUGELY subsidised, so if you have children under 12 (ish - it's not hard and fast), do think about coming along.  It'll be fun!

[The total cost per family is approximately £400 per family of four - donations mean that we can reduce this to £50 per adult, and £10 per child!  Wow!!]


Annual Conference 2016 a white birthday cake isolated on a white background with candles
The date for your diary is 16th April 2016 and it will be at the Hilton Coventry again.  Mary Reilly will be lead speaker,
and hopefully, Gita Ramdharry will be there (she's a physiotherapist for those of you who don't know Gita) and we're also having a "share your story" session with some members telling their tales, just for a change!

We're still seeking volunteers to help organise the Gala Dinner and work on some fundraising wheezes - let me know if you'd like to help! 

The Ministry of Silly Walks


This should be real, shouldn't it - isn't that the perfect description of most of us?!!   But it actually isn't all that funny, really - and don't you just wish more people knew WHY you walk like you do?


One of our members, Douglas Sager, has been working really hard on developing the idea of a short awareness-raising film, roughly based on this classic Monty Python sketch - he's found a superb film-maker and we're aiming to film the majority of it at Mary Reilly's clinic in London.  The idea is that this will be promoted to any and everyone and explain, simply and in 90 seconds (!) what having CMT means to us.  We're even hoping that we can contact John Cleese to do the voice-over! 


There's only one drawback, of course (isn't there always) - and it's cost.  Great production people cost money, and whilst they are happy to do work at charity rates, it's still more than we can fund just at the moment.


So Douglas is busy trying to gain sponsorship (if you have any ideas, please let me know and I'll pass the information onto him) and he's also set up a Justgiving page to take donations specifically for this project.


If you would like to help get this film launched - please go to  http://www.justgiving.com/douglas-sager to make a donation via Justgiving.   


Thanks - we think this could be a great way of raising awareness - and if there is any way we can raise the funds before Awareness Month, maybe we can launch the film during September! 


September is Awareness Month

Awarenss Ribbon It's not long to our annual media blitz, organised by Paula Hunter.

If you would like to share your story with the media in your area, please email Paula at paula@cmtuk.org.uk and volunteer.  It's really not that scary, and Paula will ensure you are absolutely happy with the process before she drops you in it!

Ideally, we'd like to hear from people who haven't been involved before, and maybe from relatively new members - the angle this year is "finding new members" and emphasizing how you benefit by being a member.

Incidentally, when the new member of staff joins us, we'll be having a rearrange of email addresses - I'm going to try to gradually phase out the info@ one as it seems to collect nothing but spam!

I'll be on karen@cmtuk.org.uk (already am, if you want to start using it) or fundraising@cmtuk.org.uk and the new person will have cmt.office@cmtuk.org.uk as their general email address, plus a name@ one as well.  I know - clear as mud!

Kind regards.



Karen Butcher, Chief Operating Officer

karen@cmtuk.org.uk  |  01202 432048