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CMTUK charity is one of the first UK charities to move from subscription-based membership to a discretionary donation-based charity

From 1st October 2023, UK charityCMTUKwill move from a subscription-based membership ‘fee’ to a discretionary donation-based charity.   It will no longer be a mandatory cost to become a member of CMTUK.  The change from subscriptions to donations is a move to reach more people affected by CMT (Charcot-Marie-Tooth disease) than ever before and remove any barriers to those seeking the charity’s support.  CMTUK is the UK charity dedicated to supporting people living with CMT in the UK. The change also ties in with the start of CMT Awareness Month, where the charity CMTUK aims to increase awareness of the condition during October.

In the UK, some 25,000 people are thought to have CMT, making it the most common inherited neurological condition.  However, many people are not aware of CMT, which can make everyday living and early medical diagnosis more difficult.  CMT damages the peripheral nerves, which means that muscles become progressively weaker over time, particularly in the hands and feet.  These nerves run from the spinal cord to the extremities and are responsible for passing on commands from the brain to the muscles in the arms and legs, and for passing information back to the brain about sensations, such as pain, heat, cold and touch. Because of the nerve damage, people with CMT may find that their muscles particularly in their hands, arms, feet and lower legs become weaker over time, and the sense of feeling can become dull or numb in the same areas.

Chief Executive of CMTUK, Simon Bull, said “It is a significant step in our charity’s history by replacing the mandatory membership fee with a suggested annual donation. As CMTUK is a critical support line for those who need it the most, we believe it is morally the right thing to do.  We are confident that those members who can and have previously contributed by membership fee will continue to donate in the new framework.  However, crucially those who simply cannot afford to join will now be able to access all services free of charge.  CMTUK strives to be an inclusive charity and to make membership accessible to the CMT community.”

Simon adds “The CMT community is truly amazing.  They are very supportive of each other and our charity, and their fundraising efforts are outstanding.  Our charity relies on donations and fundraising.  One of our biggest events in the year is CMT Awareness Month in October.  This year, the theme is ‘Shine a Light on CMT’.  We have lots planned to include giving talks about CMT around the UK, linking with many medical organisations to highlight CMT, illuminating buildings in CMT colours, sharing bite sized information videos from CMT specialists and lots more.  To find out more about CMT Awareness Month, please visit

Simon goes on to say “We support 100s of members from the CMT community, including those living with the condition, their family and friends, carers, employers and schools as well as medical professionals.  We support our members with unlimited access to the CMTUK helpline, practical guides and leaflets, priority access to our CMTUK events (including our annual conference), ComMenT magazine, access to CMT Kids & Teens, an alert card, regional support groups and Facebook members pages, a safe and supportive place to meet others from the CMT community.”

To find out more about the charity CMTUK, go to

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