July 2014



E-ComMenT

 

 

Well, summer seems to have come with a vengeance.  It's boiling hot in the office, but it's so lovely to see blue sky outside, I'm not complaining!

 

Lots of bits and pieces of news for you this month - it's a busy old life!

 

Thanks to everyone who has taken part in our two Sweepstakes - I was hoping to win the World Cup one with Brazil, but that went out the window....  Congrats to whoever was allocated Germany!  It's a good fun way of raising money, and we'll no doubt be doing it again!   

 

Lastly, if you're in Scotland - PLEASE don't forget to book for our biennial trip over the border!  All details and online booking can be found at http://www.cmt.org.uk/Scottish-Conference.php   The deadline for booking is 1st September!  Not that long...  See you there!

Karen
 
Awareness Month is a-coming....
Awarenss Ribbon

We're getting ready for another great awareness month he
re in the office.  If you haven't already volunteered for your "15 minutes" of fame, it's still not too late to do so.  Contact Paula, our PR person, on [email protected] and complete the case history formShe'll be in touch if she can use you in local or regional (or maybe even national!) media.   


And there's so much more you can do!

muffinHost a Cake Muffin and Tea Party, to raise awareness and funds - this can be  anything from a small gathering with your nearest and dearest, or a massive thing with everyone you know - or anything in between!  We can provide you with a pack of resources to make it go with a bang, or you can download it from www.cmt.org.uk/Teaparty.php

Awareness Kit Or, if that's a bit too much, purchase an Awareness Kit from our webshop for �10.  In it, you'll get some posters, some leaflets, a car sticker, and some silicon wristbands - put them around your town or in your doctors surgery, or give them to your consultant... wherever you think is best. It all helps raise awareness, which ultimately helps us raise funds for more research.



Join our 100 Club and commit to raising a minimum of �100!  Nichola has put together a kit to help you do that - email her at [email protected] for the information (or scroll down to Nichola's bit below).


Change your Facebook profile picture to the Awareness Logo (above).
  And you can also buy a badge in our webshop of this same image - www.cmt.org.uk/webshop.php
Awareness Badges

"Like" us on Facebook - because what you like and comment on is visible to your friends and family, thus spreading the word further.  And along with that "Like" - and if you're not already a member... JOIN!  As we keep saying - "together we are stronger" and the more paying members we have, the better the organisation can become!

Take a Family Selfie - that's you and your sibling/child/parent/neice/nephew/dog (!)/best buddy/partner - linking little fingers, post it to Facebook or whatever social media you're into, and make a donation using the details below (save this image of the JustTextGiving details to use on Facebook too!)  Tag all your friends and get them to do the same!  The point with this campaign, is that it doesn't have to be CMTers, anyone will do!  But by doing a Family Selfie, we're highlighting the hereditary nature of CMT - so lets try to get a major campaign going, just like Cancer Research UK did earlier in the year... and they didn't even start that one (but still raised �8 million)!!  But please, can you hold off posting any pics until 1st September - we want to make a splash to kick off Awareness Month!  [And if you do manage to link claws/fingers with your pet... PLEASE send us that picture - we'd love to see it!] 

     

And if you can think of anything else that we could/should be doing, please let us know.  It's really important to spread awareness of this condition - not just for us as an organisation, but so that you get the right hospital appointments, get the benefits you need, get some recognition as maybe needing a bit of help....  all manner of things.   

 

 

Message from Nichola....

 

This month has been full of exciting fundraising activities for CMT United Kingdom and I would like to highlight some brilliant opportunities available:

 

LONDON TO BRIGHTON CYCLE:

 

CMT UK have secured 10 places in the London to Brighton Cycle on Sunday 7th September - riding 54 miles in 1 day! September is our awareness month and it would be brilliant to get a full 10 participants in the challenge. If you would like to take this on and do something for charity, please contact me for further details - [email protected] or 01202 432048

 

  DORSET PLANE PULL EVENT:

 

On Monday 25th August 2014, Bournemouth Airport will be hosting the Dorset Plane Pull. Teams will be competing to see who can pull a 35,000kg Boeing 737 a distance of 50 meters in the fastest time.

CMT United Kingdom are delighted to be one of the charities involved and we have a team competing on the day raising money to support individuals affected by Charcot-Marie-Tooth Disease and their families.

Spectators are invited as there will be live entertainment, food and drink and activity stalls on site, so why not come and support our team and make a day of it!  

 

 

If you would like to sponsor our fabulous team, please visit the team JustGiving page:  https://www.justgiving.com/planepull2014/  


To find out more details about the event please visit - http://www.planepull.co.uk/ 

 

 

The 100 Appeal  

 

On the 1st July we launched The 100 Appeal and we have been overwhelmed by the support of people wanting to be part of the appeal. However we are still looking for many more fundraisers to reach 100. The concept is simple - we are looking for 100 fundraisers to raise 100 (or more if you can)!!! The funds can be raised in a number of ways and a toolkit has been produced to help provide help and ideas on how supporters might like to fundraise - download here   

 

By 100 fundraisers making a team for this appeal, we have the potential of raising �10,000 for the charity, which is a huge amount to us and would make a big difference - so why not fundraise for us during our awareness month, September?!!  

 

A fundraiser joined our appeal this month and has already completed his challenge raising over �300!!! Matthew Kersey, joined at the beginning of the month and completed the 3 peaks challenge in under 24hours and then the following weekend cycled 85 miles - brilliant effort and thank you very much for your support!

 

So why not do something brilliant and be part of 'The 100 Appeal' and make your footprint in the way forward for CMT United Kingdom.  

 

If you are interested in joining the appeal, please contact Nichola - [email protected] 

 

Want to get muddy for CMT United Kingdom?!!  

 

We are looking for people to get muddy for CMT United Kingdom and join the 'Mud Run' team! If you want to raise awareness and take on a different challenge from a marathon or bike ride, why not enter Tough Mudder or Nuclear Races which are muddy obstacle challenges. One of our supporters Mark Ghosh, competed in the Midlands Tough Mudder event this month and would like to start up a 'Mud Run' team for these events, raising money and awareness of CMT. If you are interested, please contact Mark: [email protected] 

 

Fundraising Successes  

 

I would like to highlight some of our fabulous fundraisers from this month and say a BIG THANK YOU to all of you who have donated and taken on challenges for CMT United Kingdom.  

 

Geoff Elliott-Howell hand cycled 56 miles in the Savernake Sizzler last weekend and has raised �450, brilliant effort Geoff, well done!  

 

Two supporters, Mark Ghost and Robert Lewis-Smy got muddy in the Midlands Tough Mudder Event, here are some pictures! Well done both of you completing a tough challenge and thank you for supporting CMT UK.  

 

 

Chris Pack and team ran in the British 10k run and raised �265! It was a hot day and made the run even more challenging and we really appreciate you selecting CMT UK.  

 

A huge well done and thank you to all our fundraisers from this month and wish all our future fundraisers good luck in their events.  

 

If this inspires you to take on a challenge please contact me Nichola Hibbert - [email protected] or call 01202 432048   

 
Surveys

We've got some Surveys for you to complete this month.

The first is from the Muscular Dystrophy Campaign: 

The Muscular Dystrophy Campaign is working in conjunction with CMT UK to put together a plan for a CMT condition alert card [this is in addition to the alert card that we produce and would be complementary to it]. We have created a questionnaire to get your feedback about whether you think a CMT alert card would be useful, and what you think it could look like.

 

I would be very grateful if you could fill in the short questionnaire by clicking on this link: https://www.surveymonkey.com/s/3WRRLCW 

 

Alternatively, I can send you a hard copy to fill in if that would be easier for you. You can contact me by email on [email protected] or alterntively you can call 0207 803 2865

 

Please do let me know if you have any questions and I look forward to reading your responses.

 

Best wishes,

Rebecca

 

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The second is from the Neurological Alliance, of which CMT United Kingdom is a member.  The Neurological Alliance is an umbrella group for organisations supporting people with any neurological condition and much of their work (like MDC's) is campaigning for better services.  They're collecting information about patient's experience of diagnosis and ongoing management of their condition and they would appreciate as many responses as possible. 

Find out more details by clicking this link.

*****************************************************

And lastly, from Genetic Alliance UK - another organisation that we're a member of, this one is an umbrella group for organisations supporting people with genetic conditions. 

Dear friend,
 
Genetic Alliance UK has been asked to gather the views of individuals and their families affected by suspected or diagnosed rare genetic conditions. We are conducting a survey which will help to guide the 100,000 Genomes Project. We would be really grateful if you could spare 15-20 minutes of your time to complete it.   

 

 

Background information:


There is a major new genomics project underway in England, which you may have heard about at the conference, called the 100,000 Genomes Project. It is being carried out by Genomics England (which is owned by the Department of Health). This flagship project will sequence 100,000 whole genomes from NHS patients by 2017, with a view to helping the UK to become the first country in the world to use whole genome sequencing in mainstream clinical practice.
 
At first the project is focusing on patients with rare diseases, and their families. The project is currently in its pilot phase and Genetic Alliance UK has been asked to gather the views of individuals and their families affected by suspected or diagnosed rare conditions. We are conducting a survey which will help to guide the 100,000 Genomes Project. We would be really grateful if you could spare 15-20 minutes of your time to complete it.

If you have any questions, please do not hesitate to contact Amy Simpson at Genetic Alliance UK by replying to this email or calling the office on 020 7704 3141.

Thank you in advance for your time.

Best wishes,

Genetic Alliance UK


   

 
Calling members in Lincolnshire

We've commissioned Sophie Arnold, one of our CMT Kids, and the "director" of that great CMT Big Kids video we showed you a while back, to create a short awareness video of CMT -  to highlight how CMT affects people, what challenges we face, etc.  Sophie would love to hear from anyone within a reasonable driving distance of Lincoln (where she lives) who is prepared to be interviewed/filmed and talk about their CMT.  Just get in touch with the office as usual, and we'll pass your details onto Sophie.

The video will be used in promotional materials, uploaded to YouTube and used to support fundraising applications, potentially.
 
Help with fiddly Jewellery!

We've been contacted by a lady called Ann, regarding adapting jewellery for people with weak fingers - if you have this problem, read on...
  
 
I buy silver and costume jewellery and also make some jewellery myself  but the reason I contacted you was because I have arthritis in my hands I and so adapted my jewellery with magnetic fastenings.  I also have a friend who has CMT and she said it is really useful as this means she doesn't have to wait for someone else to fasten her jewellery any more!

Ann can replace virtually any type of fastening for a magnetic one, much like this one in the picture.  

 

If you would like to know more, please contact Ann direct at

Ann Brown, 14 Kinver Road, Moston, Manchester

M40 5GX

Tel 07855260611

 

Email [email protected]


 

 

 

 
Kidz Scotland

Thursday, 11th September 2014 - 9.30am - 4.30pm


Royal Highland Exhibition Centre, Edinburgh, EH28 8NB

 

Visitor's FREE entry tickets are available!

 

Disabled Living (one of the North West's oldest disability charities) is delighted to bring the Kidz events to Scotland for the first time!  Kidz Scotland is one of the largest, FREE UK events dedicated to children and young adults with disabilities and special needs, their families, carers and the professionals who support them.

 

Are you or do you know or work with:-

  • Children/young people with a disability or special needs?
  • Parents and carers supporting children/young people with a disability or special needs
  • Pofessionals working in this field?
  • Supply equipment and services to any of the above?

If you answered 'yes' to any of these questions then this event is for you. Gain access to over 100 exhibitors offering advice and information on funding for equipment etc, mobility, seating, bathing, transport, sensory, transition, communication, sports,leisure and much more!

 

A full programme of FREE seminars will run alongside the exhibition, topics include: challenging behaviour, sleep issues, continence, moving and handling, transition, keeping children withdisabilities safe from abuse; self direct support, legal matters and much more.   Full details are on the website (address below).

 

To download your ticket, simply click here.  More tickets can be sent by post or simply download more copies from our website www.kidzscotland.co.uk

 

So enjoy the sun, don't burn, and remember - we're here to support YOU - that's the whole point of all the fundraising news... better support, ultimately, for you!   If there's anything you need, don't forget to get in touch, we might know the solution, or at the very least, point you in the direction of where a solution can be found.

Karen


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Contact:
Karen Butcher, Chief Operating Officer
[email protected]  |  01202 432048
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