CMT United Kingdom (Christchurch, )

Name

  • Name:Karen Butcher

Organization Address

  • Organization Name:CMT United Kingdom
  • Address:3 Groveley Road
    Christchurch BH23 3HB
    Dorset
    United Kingdom

Organization Phone

  • Main phone:01202 474203

Organization Web

User Email

Location

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General

  • Mission:
  • Working to support people affected by Charcot-Marie-Tooth disease.

    We envisage a world where people with Charcot-Marie-Tooth are able to participate fully in all aspects of society, with the proper management strategies for their condition in place, their mobility problems sorted out, pain managed, and with all medical professionals that they come across being fully conversant in their condition and it's ramifications. Unfortunately, the world is a very long way from there...

  • Overview:
  • CMT United Kingdom is the only national organisation dedicated to supporting people affected by Charcot-Marie-Tooth Disease (CMT). CMT is a rare neurological condition, affecting the nerves to the arms and legs. As these become damaged, people suffer from weakened and wasted feet and ankles, and the same for the arms and hands. Whilst this doesn't sound serious, the muscle wasting in the ankles and feet causes a variety of foot and ankle deformities, which in turn make walking, standing and balancing extremely difficult. Pain is a very common feature of the condition, as is chronic fatigue.

    The disease can affect people at any age, although the usual age of onset for the most common type is in the first two decades of life. The condition is progressive and incurable. Treatment is only done via management strategies - physiotherapy, orthotics and surgery being the most effective.

    When people are diagnosed, it is unusual for them to be given information on how to live with the condition, management strategies etc. This is where we come in, providing the personal advice, support and information that they require.

    We do this via personal contact through our office - by phone, email or letter; through our website; through our various social media channels; through a regular magazine and other publications; through events, such as conferences, wellness seminars, local groups and through youth activities.

    We particularly focus on younger people with CMT, as this period in life is when the condition can have the most impact - both physically, as a young person is growing and psychologically, as people are trying to find their way in the world, compete with peers, and fit in with new environments.

    We have been running Young People's Weekends since 1991, when we took 10 kids to a Centre Parcs in Sherwood Forest, funded by Children in Need. Several years later another small party went to Butlins in Skegness, but this kind of environment doesn't allow the kids to interact and really achieve what we hoped they would. in 1997 we held the first activity weekend at a Calvert Trust Centre, and we realised then the potential of what can be achieved. The weekends were originally only held when funds allow, but they have become such a hugely important part of our work, that - thanks to some amazing fundraisers - we have been able to do these every year for the past 12 years, helping hundreds of teenagers along the way. It is crucial to our development plan that we secure funding to ensure that these weekends go on - and perhaps get bigger, or more frequent or both! We even took a party of 10 to Australia in August 2016 to join the CMT Association Australia's kids event, that was modelled on ours! The kids worked incredibly hard to raise almost all of the £19,000 it cost to send them to New South Wales for two weeks. In 2018, we will be hosting the Ozzie Kids for the same period!

    We are also developing a new role within the Trustee Board of Youth Development Officer. This new role, filled by the Trustee with primary responsibility for the weekends, will allow her to develop the overall support that we give to young people, by allowing her to visit schools, children's hospitals and provide much more support on the day to day impact of having CMT for children and their parents.



  • History:
  • The charity was formed in 1986, as an off-shoot of an Canadian organisation with similar aims. Originally called CMT International UK, we became a registered charity in 1988.

    Over the years, the charity has evolved from being run entirely by volunteers in the spare bedroom, to one with one member of staff in a log cabin at the foot of a garden, to what we have today - a charity employing four part time members of staff in offices adapted specially for the purpose.

    The charity is run by a Board of up to ten people, who, because of the nature of the organisation are still quite involved in the day to day administration.

    We are a membership organisation, with people with the condition becoming members in order to receive extra support for themselves and their families, although of course, no one is turned away, member or not.

    The decision was made right at the beginning to keep in touch with the members by means of a newsletter - now a full colour magazine - and we have never seen any need to change this. Although the internet provides huge opportunities for people to connect, many of our members are elderly and still depend on the magazine in the post for their main means of contact with us.

  • Year established:1986
  • Endowment:Unknown

Registration

  • Organization type:Grantseeker
  • Country of registration:United Kingdom
  • U.K. Charity Commission ID #:1112370