Reach, Respond and React

Aim

CMT United Kingdom aims to reach out to the estimated 25,000 people with the condition, respond to their concerns and react to their needs.

CMT United Kingdom is the UK's dedicated charity for people suffering from Charcot Marie Tooth, we are a small team and we provide

•  a helpline - giving information and support to our members, professionals. Often the first contact people have after diagnosis of themselves or their children.
• a magazine - three issues of year with information about what the members have been doing, update on the charity, research, support.
• information packs - for parents, schools, doctors, podiatrists, those with CMT overseas.
• CMT Kids - offering support and activities for 11-18 year olds with CMT.
• annual conference/AGM.

Charcot-Marie-Tooth Disease is an incurable genetic condition that damages peripheral nerves. These nerves are responsible for passing on commands from the brain to the muscles (motor nerves) and for passing information to the brain about sensations, such as pain, heat, cold, touch, importantly for balance . It is the most common inherited neurological conditions effecting approximately 1 in 25,000.

Symptoms can include: 

• weakened muscles in feet, legs, arms and hands causing major difficulty with walking, balance and hand function
• Breathing problems
• Sleep Apnoea
• Scoliosis
• Hip Dysplasia
• Vocal cord paralysis
• Chronic pain and fatigue
• Blindness
• Deafness

Reach Respond and React is a project that will reach out to the members on several outreach days in different locations across the country. These days will provide help, information and advice along with practical support including physiotherapy, dietary advice and living well sessions - all designed to give people with CMT more tools to maintain, and perhaps improve, their health while living with the condition. Crucially there will also be a session for those participating to tell us what they need from the charity, to express their day to day requirements and how they feel we can react. A project worker will use the information gained from these sessions and other contact (they will be available by phone and email throughout the project) to enable us to understand the support needed and adapt the charities support to better serve our members.

This project closed unsuccessfully on 10th March 2020