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

February News!

By gum, it was cold this morning!  My hands nearly froze to the steering wheel as I drove to the office - good job it's only about five minutes from home!

We've got lots of snippets of useful information (I hope!) for you this time and some reminders!



Raising Money

There is still time to complete this survey, if you haven't already done so.  The survey closes on the 29th February, so you've still got a little time.

The results make very interesting reading and for the respondents so far, actually, the situation with GPs is better than I thought it would be with half of people saying their GP is "slightly" knowledgeable about CMT; 16% saying they are very knowledgeable and "only" 33% saying not knowledgeable at all - which still is appalling, but I did expect it to be worse! 


And don't forget, if your GP is one of those who is NOT knowledgeable about CMT at all, direct them to Muscular Dystrophy UK's GP learning module - it's not just about CMT, but about neuro-muscular conditions in general (but better than nothing).  If you'd like a flyer to hand to hin/her, just email enquiries@cmt.org.uk and Yvonne or Kim will send you one.  You can find information about it here -  

Thank you so much. 

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

Come on - if you have young children with CMT, you know you want to come!  Just log into the Members Area of the website to find all the details and to book.  There are plenty of spaces and bookings won't close until the beginning of July!

Don't forget, it's heavily subsidised, due to the generosity of Jeans for Genes!
Remember a Charity

We have recently become a member of Remember a Charity, another charity who support organisations like us in marketing legacies, and providing information to people who are looking to leave a gift to charity in their will.

A gift to CMT United Kingdom leaves a "real" lasting legacy to us, ensuring that we continue to do our work on into the future, and of course, that work includes raising funds for research, a legacy that will keep on giving on and on for future generations.

Remember a Charity have recently teamed up with Co-operative Legal Services, who are offering a discount to Remember a Charity's members - in this instance, that's you - if you're thinking of writing a will.  You can find out all the details about leaving a legacy and this special offer at http://cmt.org.uk/fundraising/leave-a-legacy/

It's very important to have legal assistance when writing a will, so that your family and dependents are properly taken care of, and that your wishes about charitable gifts are detailed properly.

We are getting an increasing number of enquiries about benefits - especially the transfer from Disabled Living Allowance to Personal Independence Payments.  We are looking into getting some in-house training for us here in the office to enable us to be better prepared, but have no information as yet, as to when that may happen (or even if, I've no idea what it might cost!!)

As far as that transfer, the DWP are now working on those with an "indefinite" award of DLA, and expect to have everyone transferred to PIP by 2018.  From the feedback received so far,  some members have retained their Mobility payments, but lost the care part, some have lost both, and some have done OK.  What is apparent is that it is very important to have plenty of corroborrating evidence on your disability when making the initial claim, and do be prepared for a battle.  Check out our guides to PIP in our Publications Library - members can access this from our Members Area. 

Benefits and Work (www.benefitsandwork.co.uk) produce all the excellent guides that we distribute to you.  Check out their website for more information - this is the page about PIP in particular - http://www.benefitsandwork.co.uk/personal-independence-payment-pip

Benefits and Work are particularly interested, at the moment, in the assessment centres that are being used for PIP assessments - if you have any information you can share with them, it will help them build a useful resource for others.  Just email info@benefitsandwork.co.uk with your information.

Disability Rights UK

Did you know that that CMT United Kingdom are a member of Disability Rights UK?  They have a huge library of factsheets that might help you with all manner of issues from benefits to employing personal assistances, apprenticeships for disabled people and much more. I certainly didn't and will be downloading them all to have available to you when I get a minute to spare (!).

Our series of 60 factsheets provide basic information about benefits, tax credits, social care and other disability related issues for claimants and advisers. All are free to download www.disabilityrightsuk.org
For more detailed information
You can find out more detailed information in our Disability Rights Handbook, available to buy at www.disabilityrightsuk.org
A selection of our online factsheets:
  • community care direct payments
  • community care - personal budgets
  • disabled facilities grants
  • employment and support allowance
  • in-work benefits
  • jobseeker's allowance
  • motability scheme
  • personal independence payment
  • residential accommodation charging
  • universal credit

And lots more, including information about education and higher education 


Annual Conference

Hilton Coventry
You've got just over a month to book for our great Annual Conference, so don't forget!  The absolutely fixed, and definite (!) deadline is Monday 4th April, so if your booking isn't with us by then, you're out of luck!

Mary Reilly is the lead speaker, talking about dispelling some of the myths that have arisen around CMT, which should be interesting!

And don't forget, as it's the 30th Anniversary of the organisation this year, we're having a Gala Dinner in the evening, so even more reason to attend!
New Awareness Cards

These have been going so rapidly we had to order another large batch a few weeks ago!   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.

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. 
CMT United Kingdom | 0800 652 6316 | karen@cmtuk.org.uk | www.cmt.org.uk