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.
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 are interested in becoming a member (it only costs £27 per year), please do get in touch.
Charcot-Marie-Tooth (CMT) is the ‘most common rare disease’, so we are trying to raise as much awareness of the condition and the charity as possible. 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, you can:
- Find out the results of our post-lockdown survey.
In our survey, we are asking the CMT community how the lockdown affected them. If you would like to take part in this survey, please click below (open until mid September)
- Read members’ stories.
We have asked several of our members to share their CMT stories with you during October, including how they coped throughout the pandemic. Keep an eye out on our social media pages.
- Take Part in a Q&A Session with the UK’s Leading Authority on CMT
This is a fantastic opportunity for you to put your question to Professor Mary Reilly (Professor of Neurology at UCL Queen Square Institute of Neurology and Patron of our charity). If you would like to submit a question (by mid September) to be put forward to Mary, please click below or email email@example.com (Please note that due to the amount of questions, Mary may not be able to answer all questions submitted).
- Find out More About CMT from a medical perspective
We are creating a campaign aimed at health professionals to make them more aware of the condition, so that they can help patients to get diagnosed quicker and gain faster access to any treatment or support. If you are a health professional click here for more information.
- Gather useful information on our social media pages
Throughout October, we will be sharing useful posts for the CMT community to then share with their contacts. 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…
Do you know anyone who is 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.
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.
Can you help us spread the word?
Feel free to follow us on social media Facebook, Twitter and Instagram. Shares are especially appreciated to spread the word further (using the campaign hashtag #CMTawarenessmonth)…
Consider becoming a member.
Our membership schemes are available to everyone affected by CMT in the UK; it only costs £27 a year to join. 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 or fundraise for our #CMTAwarenessMonth campaign, please click the button below
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.
CMT UK is part of the European CMT Federation. CMT UK was one of the founding members of the European CMT Federation and continues to work closely with them.
Can’t find what you’re looking for? Get in touch