June 2014



E-ComMenT
 
Hello from a VERY sunny Bournemouth.  It's another action packed E-ComMenT for you here - with all sorts to think about and get involved in.

Please support our wonderful fundraisers - I know we keep on about this, but these people really go out of their way to do their thing for us - and the results will benefit us all!

Maybe we'lll see you at Dorset Plane Pull - we'll be having an Stall there too - something like a Tombola or a "guess the name of the teddy" is being planned too.  If you have a giant teddy you don't want, or an urge to make a massive cake (guess the weight!) - please get in touch!  It should be a really fun event, I'm really looking forward to it!


Karen
 
 

Guess2Give.com 

 

 

We recently teamed up with Guess2Give.com, which is an innovative fundraising platform that allows supporters to set up online Sweepstakes to raise money for charity.

 

There are two ways of setting up a sweepstake, either in a group or a challenge. The group sweepstake means that you set up a sweepstake on a large sporting event (see below!) or other popular events happening that Guess2Give provide as an option and then promote to your friends and family to take part in.  

 

Or, you can set up a challenge sweepstake as an individual challenge you are taking part in such as the London Marathon. You can get your friends and family to guess how long it will take you for example or number of calories burnt. This platform can be a great tool to maximise sponsorship when taking part in a challenge event. Visit www.guesss2give.com and set up your own sweepstake for CMT United Kingdom!


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British Grand Prix Sweepstake

Many thanks for your enthusiasm for the World Cup Sweepstake the other week - all the places were sold before the deadline, and that seven hour campaign raised us around �100!  Not bad going!
 
So, for those of you who said you didn't get set up in time - this next Sweepstake for the British Grand Prix has two weeks to run - the date of the event is Sunday 6th July, so as long as you've bought your entry by then, you're in!  You have 12 days and counting....  

BUT there are only 21 possible entries, so don't leave it too long, they may be all gone (I've got mine!)

 

 

 

   
Patient Information Day

John Barton, our Co-ordinator for our Central London group, has been talking to Professor Mary Reilly, and has been lucky enough to be able to organise a Patient Information event with her and her team at the National Hospital for Neurology on 27th September.

We'd like to make sure that this opportunity is open to as many as possible - if you are within easy reach of London, please contact John on john.barton@cmtuk.org.uk and reserve your place.  Places are VERY limited, so be sure to get in quickly! 


See you there!

 

Message from Nichola....

This month has been full of exciting developments in fundraising 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 - nichola@cmtuk.org.uk or 01202 432048

 

  

 

Feeling strong? We need a team of 20!!!


On the 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 are looking for a team of 20 people to take part and raise money to support individuals affected by Charcot-Marie-Tooth Disease and their families.

There will be live entertainment, food and drink, stalls and exhibits are all on site to keep our pullers and spectators amused throughout the day!

If you would like to take part in the Dorset Plane Pull on behalf of the CMT United Kingdom please contact Nichola : 01202 432048/ nichola@cmtuk.org.uk

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

 

And to support the team, if you're not feeling strong enough.... go to www.justgiving.com/planepull2014

100 Appeal

 

  

Launching 1st July - I am seeking 100 people to raise �100! A toolkit will be available to be downloaded from the 1st July and you can also call the office to request a pack. The toolkit will include a number of helpful fundraising ideas tips to help you raise your �100.00.

 

 

Fundraisers

 

A team of 13 from Focus Hotels are taking on the Three Peaks Challenge at the end of this month for a number of charities - one of which is CMT United Kingdom! We wish them all the luck and look forward to hearing about it next month.

 

Heard of Tough Mudder Events?! Well one of our supporters is taking this on next month. These events are extreme obstacle courses and they have events all over the UK during the year. Support Mark Ghosh and visit his JustGiving Page - https://www.justgiving.com/Mark-Ghosh   

 

A group of fundraisers are completing in the British 10k London Run for CMT United Kingdom and to see more details about the event please visit https://www.justgiving.com/CMT-Alpha-and-friends 

   

Good Luck to all our Fundraisers and thank you so much for your support!!!

 

 

If this inspires you to take on a challenge please contact me, Nichola Hibbert - nichola@cmtuk.org.uk or call 01202 432048

MORE members....

Don't forget, if you have extended family with CMT, please let them know about us and encourage them to join.

Other than raising a LOT of money over the next few years, another target for us will be trying to get in touch with, and turn into members, a lot more of that 25,000 people out there with CMT.  At the moment, we have 4% of that number as paying members, which, if you think about it, is not that great.  We think - we hope - we can get to 20% over the next few years. 

We are going to need your help with finding these people - some might be in your own family, of course - but many more are in your neurologist's clinic, physio therapy centre, even your GP surgery.  We can provide you with flyers to give to these people to pass onto others they come across - yes, we can post them, but experience tells us that physically handing them out is far more valuable.

You see, its not just about what we can do for those new people - it's about what they can do for us.  More members gives us more clout to influence change - via the NHS, government or whatever - even what is researched or what isn't.  More members means more awareness - and that leads to more fundraising opportunities.   More fundraising opportunities leads to more money in our coffers and THAT, my friends, is all about YOU, and back to what we can do for you, to make your lives better, find a cure/treatment, provide better information services  and lots more.... 

Together we ARE stronger. 



Planning head for September's  Awarenss Ribbon

Awareness Month   

 

It's still not too late to complete our "Case Story" survey to use your story for Awareness Month - please, please click on this link
 
to help us with this year's publicity campaign.  It really does make all the difference.

Scottish Conference


Don't forget to book for our Scottish Conference on 13th September - you can find all the details at  http://www.cmt.org.uk/Scottish-Conference.php and that includes a link to the booking facility. 
 

 

ANNUAL CONFERENCE 2015   

When:  11th April 2015

Where: Hilton Coventry  

 
You lucky people - you're getting a sneak preview!!  The final programme has yet to be completely finalised, but DR MIKE SHY, probably one of the world's leading specialists in CMT (and a really lovely man), has agreed to come from Iowa to join us.  He'll be joined by Professor Mary Reilly - and A.N.Other, yet to be decided.  No workshops next year!

And you can get a discount on your place at this amazing day by booking now via Eventbrite - http://www.eventbrite.co.uk/e/annual-conference-2015-tickets-12048215537 - before anyone else.  It's not even on our website yet!  Don't forget, there are two prices - paid up Members get a preferential price over Supporters, but if you book before 30th November, you ALL get a reduced rate.  How's that for generous?  And you can see how much you'd save if you JOINED!!!

See you there!  
 

 

Benefits

Are a hot, and very political, topic at present, with the government's austerity measures hitting disabled folk hard.  I'm not getting into that, otherwise we won't have room for anything else (says she, grinding her teeth!)

But we are members of an excellent organisation called Benefits and Work, who publish detailed guides to claiming Employment and Support Allowance, Disability Living Allowance, Personal Independence Payments and more - these guides not only encompass the initial application, but mandatory reconsideration, appeals, tribunals and lots more.   If you are struggling with a benefits application, whilst we may not be able to help you individually (Citizen's Advice Bureaux are your best bet for that), we CAN send you copies of these guides.

If you wanted to, you can join Benefits and Work yourself to access all their resources, including a useful forum, for a mere �19.95 per year.  It might just be the best twenty quid you spend!  Check them out at www.benefitsandwork.co.uk

And this article, which is free to read, is excellent on how to survive on Benefits - http://www.benefitsandwork.co.uk/surviving-life-on-benefits

 

 

 

First Independent Review of the Personal Independence Payment (PIP) assessment - call for evidence


 

I am writing to let you know about a call for evidence that has been launched today as part of the first Independent Review of the Personal Independence Payment (PIP) assessment.  I hope you will be able to contribute evidence through this process.   

 

To recap on the background to the review itself, this is a requirement set out in the Welfare Reform Act 2012.  Section 89 of the Act commits the Secretary of State for Work and Pensions to publish two independent reports on how the Personal Independence Payment (PIP) assessment is working. The first is due within two years of PIP starting in April 2013.

 

On Thursday 10 April 2014 the Minister of State for Disabled People announced that Paul Gray CB had been appointed to carry out the first independent review of the PIP assessment.   The Terms of Reference for this Independent Review were published on GOV.uk on 21 May.

 

The call for evidence launched on 23 June.  It will be one of several methods used to gather information during the review, and is a vitally important part of process.  We are interested in hearing from both organisations and individuals who have information about how the PIP assessment is operating.  Paul Gray is keen to take a broad look at the overall PIP process, so we are seeking input about all stages of the claimant journey.  Evidence is particularly invited from those with first-hand experience of PIP.  Information submitted will be used to help inform Paul Gray's report to the Secretary of State for Work and Pensions, which will be laid before Parliament before the end of 2014.

 

The call for evidence can be accessed here:


https://www.gov.uk/government/consultations/personal-independence-payment-pip-assessment-first-independent-review 


It is available in a range of accessible formats.  Responses can be sent via an online survey, by email or post.  Details are in the document. 

 
We look forward to receiving your evidence.  Please reply by the closing date of 5 September.  


If you have any queries about the call for evidence exercise please contact:

Email: pip.independentreview@dwp.gsi.gov.uk   

 

Post:  PIP Independent Review Team, Room 3S25, Zone South H, Quarry House, Leeds, LS2 7UA

 

Phone: 020 7449 7536

 
phew!  So much happening, I can barely think of it all. 

Hope you enjoy our E-ComMenTs - don't forget, if you have anything you like to share with others, let me know, and it can go in the next edition. 


Karen
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Join our Community at CMT United Kingdom

 

So  what are the benefits of joining us?

Supporters get: 

  • Three editions of our magazine. ComMenT, per year attached to an email like this one
  •  Monthly e-ComMenT's with lots of extra news.
  • Local groups around the country
  • Local contacts - there are almost 30 members around the country who are happy to talk to you by phone or by email  

MEMBERS GET ALL THAT PLUS....

  • Access to our members only section of the CMT website with its huge library of publications and the Members' Forum
  • Alert cards for yourself and close family members 
  • Discounted attendance at our Annual Conference - next one on 5th April at the Hilton Hotel, Swindon, Wiltshire.  And you get the right to vote at the Annual General Meeting. 
  • ComMenT by post (if preferred), and access to 10 year's worth of back-numbers.

 And all this for only �22per year, or �27 for families!   

 

Join at www.cmt.org.uk 
Contact:
Karen Butcher, Chief Operating Officer
info@cmtuk.org.uk  |  01202 432048
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