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Supporting people affected by Charcot-Marie-Tooth disease.


Share your Skills

Charcot-Marie-Tooth UK is a truly democratic organisation. Everything is a team effort to which everyone contributes, whether by paying their subscription or sending a donation, sharing their successes in managing their condition, holding fundraising events, raising awareness by speaking to the media about their condition, organising a local group or participating in the policy making and governance of the Organisation. Every member has a voice and all contributions are valued. If you would like to help in any of these ways, please get in touch (use the Contact Us link at the top of the page).  Don’t forget, Charcot-Marie-Tooth UK is run almost entirely by volunteers and more assistance is always gratefully accepted.

Would you be interested in becoming a Trustee? The Trustees are responsible for policy making, the governance of the organisation and the running and management of all day to day business. The committee meets 4 times a year, and meetings are held at the Hilton Hotel, Paradise Way, Coventry. Three meetings per year are one day meetings, starting at 10.30am and finishing by 5pm – if you are too far away to make this realistic, we can arrange accommodation as well.  The fourth meeting, usually in November, is a weekend meeting, starting at lunchtime on Saturday and finishing at lunchtime on Sunday. All expenses related to the meetings, such as travelling expenses, food and accommodation are met by the organisation.  Between meetings business is conducted mainly by email but the workload is not onerous – lots of emails and the occasional conference call. For an informal chat with one of the existing Trustees to find out what is involved please contact Karen Butcher on 01202 474203 and she will arrange it.

Some ideas of other ways to volunteer your time:

Be a “Guinea Pig”!

There are several ways to do this – if your neurologist is based at a teaching hospital, you could be used for teaching new medical students.  These sessions are held a couple of times a year, and you may be paid for your time.

We are also contacted periodically about research projects that may require additional subjects.  Check our Research page regularly, and if there are opportunities to become a subject in a clinical trial, the information will be there.

Become a local group co-ordinator or local contact

For members, there is an opportunity to meet other members and people with CMT and offer personal support through our local groups network.  More information on how to start a group can be found within the Members section of this site.  There is also information on how to become a local contact.

Social Media Guru

Keeping the Facebook group and the Twitter active and interesting is quite a task these days, and we don’t have a presence on Pinterest, Google+ or LinkedIn at all.  If you are au fait with these, and want to help out, please ring Karen for a chat – we’d appreciate your help!


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