How You Can Support People Living with CMT by Voting for CMTUK (Charcot Marie Tooth United Kingdom) This October

Introducing Charcot-Marie-Tooth UK, one of the four charities competing in the My Favourite Voucher Codes charity poll this October. If you cast your vote for this good cause, you are helping them to win this months donation of 20% of our profits! Find out more about what CMTUK do, how you can support them and why they deserve your vote, below. 

CMTUK is a UK charity that supports people living with Charcot Marie Tooth (aka Hereditary Motor and Sensory Neuropathy) and related conditions, such as HNPP. It was first established in 1986 and became a registered charity in 2005. CMTUK has a helpline that provides information and support to people with CMT, their families and carers.

What is CMT?

Charcot-Marie-Tooth Disease is a group of inherited disorders which cause peripheral nerve damage mostly in arms and legs. These nerves are responsible for passing on commands from the brain to the muscles (motor nerves) and for passing information to the brain about sensations, such as pain, heat, cold, touch, importantly for balance – where your joints are in space (sensory nerves). When these are damaged, people are said to have a neuropathy. Because of this nerve damage, people with CMT may find that some of their muscles become slowly weaker, particularly in their feet and hands. Some find that feeling becomes dull, or numb, in the same areas. 

Weakness in limbs, hammer toes, and loss of sensation in limbs are the common symptoms. The symptoms vary widely between the different types of CMT and even within the same type. 

Some sufferers will need greater support with mobility from an early age whereas others may be well into adulthood before needing orthotics, walking aids, as the condition progresses, some will need wheelchairs/mobility scooters. Surgery to realign toes, feet and ankles is not unusual. 

There are over 100 types of CMT and it is estimated that 1 in 2,500 suffer from it, that is about 25,000 people in the UK. For a condition affecting that many people it is fairly unknown even amongst GPs. CMTUK helps to raise awareness of Charcot Marie Tooth to medical professionals and to members of the public.

What Does CMTUK Do?

CMTUK is a national charity with a small team based in Christchurch, Dorset who run the charity by:

• responding to the helpline, 
• sending out information to those diagnosed with CMT, doctors, schools etc., 
• assisting those recently diagnosed,
• arranging conferences and health and wellbeing days,
• supporting the Regional Support Groups across the UK,
• maintaining the website and social media presence, 
• producing the CMT magazine (ComMenT),
• Organising the annual awareness campaign,
• admin and accounts,
• Assisting with fundraising activities,
• Fundraising through grant giving trusts,
• Liaising with international CMT patient groups.

There are also the CMTUK trustees who look after the charity’s governance alongside the Chief Executive. The majority of members of this board are required to either have or have family members with CMT.

There are a number of Regional Support Groups across the four nations which are run by volunteer coordinators who arrange meetings both online and face to face for people with CMT to meet, talk, share their experiences, and have some fun. These meetings are a great place for people to meet others with CMT and to support each other.

What Is CMT Kids?

CMT Kids is another valued service CMTUK offers. CMT Kids arranges adventure weekends, days out and meet-ups to support young people living with CMT. They get to have a great time, meet others with the same condition, build a network of friends and build their confidence. 

CMT Kids is made up of two groups, one for young people aged 11-18, and a second for those 18-30. Karin Rodgers has been curating action-packed weekends and events through CMT Kids for 21 years.  The goal is to inspire young people living with CMT to get active, social, and uninhibited.  Young people of all abilities are welcome!

Our CMT Kids group is very active – we hold activity camps for the 11–18-year-olds and day trips for the younger ones such as Legoland, the Zoo and the aquarium. CMT Kids also hold regular Quiz Nights or Games Nights online.  Much fun is had by all within a safe, supportive environment.  The activity camps are amazing, and the children learn how to be more independent and confident and form long lasting friendships with others with the same condition. Children feel less alone and can talk freely and ask questions. 

Karin, Youth Development Worker, said “CMT Kids is in the business of adventure-making, creating experiences where young people can push their limits and be tested, but crucially, in a safe environment in which they will always succeed and achieve.  Everyone’s welcome and many of the members still attend while in wheelchairs or plaster casts, for example.  

We want to build CMT Kids and make sure that young people with CMT everywhere don’t feel alone anymore.”  

How Can I Help CMTUK?

The best way to support CMTUK right now is by voting for them in our October charity poll - it's free, it's easy and you just need to click the circle next to CMTUK.

You can also support them through Fundraising and Donating for this worthy cause. October is CMTUK’s awareness month and informing people about CMT is so important. There are many people who are suffering from CMT and may not know that it is CMT or know that CMTUK exists to support them. 

How Can I Contact CMTUK?

You can get in touch with the team via email at enquiries@cmt.org.uk or give them a call on 01202 474203. Visit the CMT website (cmt.org.uk) to find out more about this fantastic charity. You can also find them on Facebook, Twitter, and Instagram.

Will you be voting for CMTUK this October? Head over to our Homepage to cast your free vote today and support this worthy cause. Don't forget the share this article with friends and family too, so you can secure the donation for your charity of choice.