UK Charity Seeks to Boost CMT Knowledge During Awareness Month in October

UK Charity Seeks to Boost CMT Knowledge During Awareness Month in October

During Charcot–Marie–Tooth Awareness Month in October, the nonprofit CMT UK is aiming to increase knowledge about what it calls a common rare disease in the United Kingdom (UK).

Charcot–Marie–Tooth disease (CMT) is thought to affect about 2.6 million people globally, including 25,000 in the UK, according to the charity’s news release.

“If we could get people talking about CMT during the Awareness Month and beyond, that would be amazing,” said Simon Bull, CMT UK’s CEO. “Even if we can help just 100 more people to be diagnosed with the condition, it would really help them to manage their symptoms. It would also mean that we could provide support to those already living with CMT but didn’t know about our charity.”

By raising awareness of the progressive disease among health professionals, he added, patients could be diagnosed sooner and have quicker access to treatment and support. Diagnosis is usually centered around comprehensive medical histories and physical examinations. Lack of a family history does not rule out CMT, but might prompt a specialist to investigate diabetes, overexposure to certain medications, and other prospective causes.

The onset of CMT symptoms may differ between patients, even among relatives with the same condition. Among the several different types of CMT, common symptoms include lower limb weakness, high foot arches, curled toes, walking and running difficulties, and decreased sensation in the legs and feet.

Patients may contact the organization to get more information or request support. CMT UK is also offering healthcare professionals a free package with evidence-based information about the condition, as well as details on future professional conferences.

“Most of CMT UK’s trustees are living with CMT, so they know first-hand the type of support that is needed for our members,” Bull said. “For a small charity, it’s really active with lots of information available about the condition, managing it, and living well.”

Part of the European CMT Federation, CMT UK supports patients and caregivers, promotes research, and educates the public about the disease. The organization hosts annual conferences, supports a special group for young patients, and has regular membership meetings organized by regional support groups. Of course, it also must raise funds.

“Without all the very generous donations we receive, we would not be able to support all our members and health professionals, so any donation of any size is gratefully appreciated,” Bull said. Visit this page to make a contribution.

CMT UK is asking supporters to help its Awareness Month efforts by sharing its posts, using the hashtag #CMTawarenessmonth, on Facebook, Twitter, and Instagram.

Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”
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Margarida graduated with a BS in Health Sciences from the University of Lisbon and a MSc in Biotechnology from Instituto Superior Técnico (IST-UL). She worked as a molecular biologist research associate at a Cambridge UK-based biotech company that discovers and develops therapeutic, fully human monoclonal antibodies.
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Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”
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One comment

  1. Marian Stabley says:

    I was diagnosed with CMT when I was older. I was accepted into research program @ Johns Hopkins but after MRI & diagnostic testing they confirmed I had CMT & a mild case of polio in my youth. I was no longer accepted into research because I had a dual health issue. My CMT is very aggressive. I accept my disability & try to live & enjoy my loving family & many friends. I use a walker when out & about. YOU MUST KEEP. A POSITIVE ATTITUDE. Just look around you see many more cases that are more dibalitating . Help the young children with your research.

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