MDC's Advocacy Service   

Last year the Muscular Dystrophy Campaign officially launched our new advocacy service - in order to support people with CMT and related neuromuscular conditions, receive the services that they are entitled to. The advocacy service has proven to be hugely successful with more and more people coming to us for support and advice.

In a 2011 survey of over 200 Muscle Group members 57% of respondents affected by neuromuscular conditions reported that they struggle to access the necessary care, support and adaptations to live a full and independent life.

Lucas Hamilton has CMT. His grandmother contacted the advocacy service asking for support getting Lucas's family re-housed as their house was no longer suitable to meet his progressive needs. We contacted the local authority and the family are now waiting for an OT assessment which will see them given emergency re-housing status. This will make it easier for the family to get re-housed. We continue to work with the family to ensure that they are re-housed as soon as possible.   

Stories like Lucas's led the Muscular Dystrophy Campaign to publish the new and exciting Advocacy Pack aimed at giving people the tools to self advocate.   

The Advocacy Pack is designed to empower people to speak up, fight for their rights and help them understand their legal entitlements. The pack consists of a series of comprehensive fact sheets, which cover the major issues people are facing. These issues include Disability Living Allowance, Employment Support Allowance, Housing and Care Packages.

These factsheets will equip people with the relevant information to be able to ascertain what they are entitled to; and how to go about getting what they are entitled to. Alongside the factsheets, we have included a number of letter templates intended to show people how a letter should be structured and what information should be included.    

If you would like to find out more about the Advocacy Pack, please contact the Advocacy Team at the Muscular Dystrophy Campaign on 0800 652 6352 or at info@muscular-dystrophy.org

We have a small number of advocacy packs in the office, if anyone would like one, or you can download it from here www.cmt.org.uk/advocacy.php 

Anyone up for a Challenge?  

Trek like an Olympian

Kilimanjaro, 20 to 30 October 2012

What better way to follow competing in the London 2012 Olympics than by climbing Kilimanjaro for the Muscular Dystrophy Campaign/CMT United Kingdom? We're thrilled that Rob Moore, TeamGB hockey player and one of the most-capped England players, is going to do just that: follow one peak experience with another.  

Come and join Rob on the trek to the top of the world's highest free-standing mountain in the beautiful heart of Africa in October. Not only is the trek an extreme physical and mental challenge but the itinerary is so well put together that it'll give you the best possible chance of reaching the summit.  

And when you reach the top, you can rest in the knowledge that you're helping the Muscular Dystrophy Campaign to beat muscular dystrophy and related neuromuscular conditions and to improve the lives of everyone affected by them. You can choose to allocate the funds you raise to support our research into CMT, or to support CMT UK. It's up to you.  

To book your place or find out more about this once-in-a-lifetime experience, do get in touch with Julia on 020 7803 4828 or email events@muscular-dystrophy.org       

YOUNG PEOPLE'S WEEKEND 2012

Don't forget you can book NOW for the next YPW event at Bendrigg Lodge, Kendal on 26th-29th October.  Email Karin at karin@cmtuk.org.uk for further information.   The lower age limit is 12 and the cost will be £45.  You can download forms and information at  http://www.cmt.org.uk/ypw-events.php.   

If you'd prefer me to send you forms in the post, just email or phone and I can do that, without any problem.  We also have a small fund, kindly provided by a member, to assist with travelling expenses - please do ask us about how we might be able to help with this.   

Scottish Conference

For everyone north of the border (and south if you want to!), we'll be hosting a Regional Conference in Scotland - at the Hilton Hotel, Strathclyde on Saturday 15th September.  So far, we have an Orthopaedic Surgeon, a Rehabilitation Consultant and an Orthotist booked to speak, so it should be a great day!  

To book early and reserve your place, click here to download a booking form.  Letters will be going out to all Scottish Members in the next month or so.