Every year during October, we increase our activities to spread the word as widely as possible throughout the UK about our charity and the condition of Charcot-Marie-Tooth. This year, our theme is ‘Shine a light on CMT’.
About the Condition, CMT
CMT isn’t a condition related to the teeth – Howard Tooth was one of the three doctors who first described the condition in 1886!
Charcot-Marie-Tooth disease (CMT) is a hereditary condition that damages the peripheral nerves. 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.
In the UK, some 25,000 people are thought to have CMT (approx: 1 in 2,500) making it the most common inherited neurological condition. Hereditary Neuropathy with Pressure Palsy (HNPP) is a condition that is linked to CMT with comparable symptoms. To find out more about CMT, click here.
About our Charity, CMTUK
CMTUK is a small but national-reaching UK charity. We proudly support people living with Charcot-Marie-Tooth. We rely on fundraising donations to help us provide essential services to our community, make the wider community more aware of the condition and support further research. If you would like to find out how to become a member of CMTUK, please click here.
What is Happening During CMT Awareness Month?
Charcot-Marie-Tooth (CMT) is the ‘most common rare disease’, so we are trying to raise as much awareness by shining a light on the condition and the charity. In the UK, some 25,000 people are thought to have CMT, making it the most common inherited neurological condition, although many people have not heard of it.
During the awareness month, we will be:
Distributing new literature for libraries, schools and workplaces to display/ download.
We are creating ‘Shine a Light on CMT’ A4 posters, as well as downloadable fact sheets. If you are able to display our A4 posters on your notice board at work, or perhaps in your local community centre or school, please get in touch and we would be delighted to send you our posters (either by email so you can print it off, or by post).
Encouraging Shine a Light on CMT ‘Walk & Talks’.
If you have CMT and would like to organise an informal ‘walk & talk’ with your work colleagues, friends or family members, please do get in touch, as we can send you some useful information…
Sharing bite sized information videos from CMT specialists
From physiotherapy tips, to the latest CMT research updates, keep an eye out on our social media platforms to view our bite sized information videos.
Giving talks around the UK & Northern Ireland
CMTUK representatives will be giving talks about CMT in the Glasgow, Belfast, West Midlands and Bristol areas. If you are living with CMT in one of those areas, and would like us to come to your school, workplace or local event in October, please get in touch.
Creating a list of CMT-friendly venues and services
We are starting to create a list of CMT-friendly venues and services, nominated by the CMT community. If you would like to nominate a CMT-friendly business, education centre, workplace or service, please let us know here: https://forms.office.com/r/Ja1id7Md4c
Encouraging Buildings to light up
Linking with our theme ‘Shine a Light on CMT’, we are encouraging buildings to light up in one of the CMTUK logo colours for one night in October. If you know of a building that could be lit up, please get in touch!
Linking with Medics4Rare Diseases
Medics4RareDiseases is an organisation aimed at medical professionals with little prior knowledge in rare diseases. It consists of the basic principles of what rare disease is, how you may suspect a rare disease, challenges faced by those living with a rare disease and how to support them. They will be sharing details about CMT during October.
Linking with Rare Revolution
Rare Revolution Magazine (as well as its website and social media platforms) aims to bring about a dramatic and wide reaching change in conditions and attitudes fore the rare disease community. They will be sharing details of CMT during October.
Sharing information on our social media pages
Throughout October, we will be sharing useful #CMTAwarenessMonth posts for the CMT community to then share with their contacts, to help spread awareness of CMT as widely as possible. To follow our social media pages, please click these links: Facebook, Twitter, Instagram
Can you help us during October?
As a small charity, your help in reaching a bigger audience would be gratefully received.
Here are 5 ways you can help us…
1. Do you know anyone who is (or may be) living with the condition?
Please do consider passing on details about our charity. They can also contact us here to request a free awareness pack with details about coping with the condition and how our charity can support them.
2. Is your GP aware of CMT?
You can email your local GP with a link to this webpage so that they can become more aware of the condition. Your GP can also contact us to receive a free GP information pack.
3. Can you help us spread the word?
4. Become a member.
Anyone living with CMT, or with an interest in CMT, who lives in the UK or overseas, can become a member of CMTUK. Click here for more information.
We are very grateful for any donation or fundraising, however big or small, as without donations, our charity would cease to exist and we would not be able to offer support to all our members and health professionals. To donate to CMTUK, please click the button below
Or to set up a fundraiser, click this button
Thank you for taking the time to read about our aims during #CMTAwarenessMonth. We hope you found it useful.
If you are able to support us in any of the 5 ways above, it would make a big difference to our charity and our members – thank you.
CMTUK is part of the European CMT Federation. CMTUK was one of the founding members of the European CMT Federation and continues to work closely with them.