Guidance for people with CMT, or looking for information about how to cope with Charcot Marie Tooth Disease

ABOUT US

Giving Direction in a Time of Uncertainty

Having been diagnosed in my early teens with CMT-1A, I found that once my diagnosis had been given, there was a void in guidance and advice in what I should do to maintain or improve my quality of life, being told by medical professionals that "a cure is likely soon". That was over 15 years ago. Today, I hear the same words from different professionals, with none taking an active role in seeing how life for people with CMT can be improved or made more bearable with what is possible today, with too many promises about breakthroughs that may never come. 

CMT is the most widely inherited neurological disorder affecting over 3 million people, yet the resources available are either behind paywalls, outdated or too simplistic to provide any tangible benefit to people with the condition. The focus can be misplaced, going into great detail about the genetic and molecular biology behind the disease, and only a handful of words on fitness, exercise and the things that can make a real difference to a person with CMT.

 

Our Purpose

The role of CMT Central is to help guide and educate people about CMT at any stage in their life, whether they or someone they know, has been recently diagnosed or has lived with it for decades and are looking for practical, applicable help and advice. This site is not a replacement for a relationship with a medical professional who can accurately monitor a person's condition, but aims to be a community free to all and focused on what actions can be done today to improve, or at the least, maintain mobility, fitness, and wellbeing where possible. While there is still no cure for CMT, I hope this site can help make life better for people with the condition until a day arrives where CMT is consigned to medical history. 

Aims of CMT Central

  1. Provide practical advice for people with CMT 
     

We believe that providing practical, applicable advice for people with CMT comes first and that where possible, aiming to improve quality of life is the most important aspect for a person with the disease.

 

2. Free access to all resources, 100% of the time without intrusive adverts
 

Currently, some CMT websites charge membership fees for access to information, which we do not feel is fair as help and advice should be done charitably and not limited by income. Beyond this, targeted adverts, banners and bait-click articles are some of the most common ways to generate revenue for websites, which can detract from the purpose of the site as well as be an intrusion into a person's privacy. CMT Central aims to generate revenue through more meaningful ways, such as donations and affiliations with relevant companies that can benefit people with CMT. 

3. Provide an inclusive global community for people impacted by CMT
CMT Central aims to be a positive, community-driven site for people with CMT, or who want to learn more about CMT and how to manage it. Many different sites and communities can be either sterile through a heavy focus on academia, or extremely negative due to the unfortunate impact CMT can have on people's life. CMT Central will always encourage support and advice, but will also encourage positivity over negativity where appropriate.

Where Do Donations and Affiliation Revenue Go?
 

All donations and revenue generated by CMT Central will go back into the running of the website, with content currently created for free.  Currently the website costs ~$200 a year in maintenance costs alone, with many hundreds of hours being spent on research and content creation. Any donations or revenue over this amount will go into improving the site.