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Supporting people affected by Charcot-Marie-Tooth disease.

In the News

Charcot-Marie-Tooth UK – and indeed, Charcot-Marie-Tooth Disease – are very rarely mentioned in the press, or anywhere else in the public domain, for that matter.

We are work hard to change that over the years; September has now been designated as CMT Awareness Month internationally, with our friends in the States and Europe also collaborating to work on this problem.

If you are a member of the press, or in public relations and would like further information on Charcot-Marie-Tooth UK, please go to the Press page.

For members, if you’re mentioned in the press, particularly with regard to something you’ve done or achieved which relates in some way to your CMT, please send us the clipping.

Scroll down for mentions:

CMT&Me App to be launched this month!

CMT&Me App to be launched this month!

  Would you download an app to participate in a survey that promises to collect rich demographic and epidemiological data about all stages of CMT and its treatment, as well as quality of life?  The CMT&Me App is launched by Vitaccess this month. The app allows you to track your symptoms over time. By taking part in the study and answering short surveys, you’ll help us gather invRead more...

Awareness Month Coverage 2018

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Awareness Month has gone extremely well, kicking off with our trustee, Paul Fleming being on Sky News Sunrise on 1st Septembe.  You can watch this great interview at https://www.facebook.com/CMTUK/videos/2086225721387740/  Read more...

Charcot-Marie-Tooth disorder: I grew up being told I was lazy and useless

Charcot-Marie-Tooth disorder: I grew up being told I was lazy and useless

ROSE Brewis was an adult before she discovered she had progressive muscle-wasting disease CMT which affects thousands in the UK. As Rose Brewis grew up she became accustomed to the taunts and jeers of her classmates who branded her “lazy” and “useless”. Throughout her childhood, Rose, 31, who was born in New Zealand but now lives on the Isle of Man, found school exhausting and struggled with aRead more...

Pain and fatigue could be symptoms of THIS incurable neurological condition

Pain and fatigue could be symptoms of THIS incurable neurological condition

CHARCOT-MARIE-TOOTH is a neurological, incurable condition which can cause symptoms including uncontrollable pain and chronic fatigue. Charcot-Marie-Tooth (CMT) can also cause deformities in the lower legs and feet, leading to balance problems and falls. Professor Mary Reilly, a neurological expert, estimates around 23,000 people in the UK have Charcot-Marie-Tooth, which is named after the thrRead more...

What is Charcot-Marie-Tooth disease? Here's what you need to know

What is Charcot-Marie-Tooth disease? Here's what you need to know

During September’s Charcot-Marie-Tooth Disease Awareness Month, we look at the symptoms of this inherited neurological condition. Have you ever heard of Charcot-Marie-Tooth disease? It’s the most common inherited neuromuscular disorder, and while there are thought to be around 23,000 people in the UK living with it, few people seem to have heard of it, and many are thought to be unaware they hRead more...

A father has told of heartbreak after son inherits the same rare degenerative condition and is now struggling with mobility — aged just 5

A father has told of heartbreak after son inherits the same rare degenerative condition and is now struggling with mobility — aged just 5

A father has told of his heartbreak after his son inherited the same rare degenerative condition as him and is now struggling with mobility — aged just five Andrew Frerichs, 51 and son Calum, 5, both live with Charcot-Marie-Tooth disease (CMT), a condition which affects the dexterity of their hands and legs. But dad Andrew does not want his son to be disadvantaged by the disease, which causeRead more...

Daily Mail Snippet 27 August 2017

Daily Mail Snippet 27 August 2017

Charcot-Marie-Tooth disease (CMT) is a genetic neurological disorder that affects around 23,000 people in the UK but is little known. CMT can cause uncontrollable pain, chronic fatigue and deformities in the lower legs and feet, leading to balance problems and falls. It is currently incurable but can be managed effectively. The charity CMT UK (cmt.org.uk) advises on management, and also support wiRead more...

Mother with feet-shrinking condition only got diagnosis after going online

Mother with feet-shrinking condition only got diagnosis after going online

A mother who suffers from a disorder which makes feet shrink only managed to get a diagnosis after sharing symptoms online. Sophie Earl-Park suffers from Charcot-Marie-Tooth disease (CMT), a group of inherited disorders that damages nerves outside the brain and spine, as well as a number of other health conditions. Mrs Earl-Park said she shared a picture of “curling and arched” feet on FacebRead more...

'My daughter was in a wheelchair just nine months after being diagnosed with rare disease'

'My daughter was in a wheelchair just nine months after being diagnosed with rare disease'

A mum wants to raise awareness of a rare condition that saw her daughter in a wheelchair just nine months after she was diagnosed. Amanda Smith, 41, from Bingham, says that her daughter, Ciara Cox, underwent a dramatic deterioration after she was diagnosed with Charcot-Marie-Tooth Disease (CMT) at the age of four. The condition damages the peripheral nerves, causing muscle weakness and numbnRead more...

Charcot Marie Tooth disorder: Everything you need to know

Charcot Marie Tooth disorder: Everything you need to know

September is the start of awareness month for Charcot Marie Tooth, a neurological disorder that affects around 23,000 people in the UK. But what exactly is it? And how do you know if you have it? A charity supporting the disorder hopes that the awareness month will hopefully reach around 20,000 others in the UK who may be struggling with CMT but don’t know they have it. What is CMT disorder? Read more...

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