Background
What motor neurone disease is
Motor neurone disease is a group of progressive neurodegenerative conditions that damage the motor neurones carrying signals from the brain and spinal cord to the muscles. As those neurones fail, people gradually lose the ability to move, speak, swallow and breathe. The most common form is amyotrophic lateral sclerosis, or ALS.
There is no cure. Care focuses on slowing progression where possible, managing symptoms, and supporting people and their families to live as well as they can for as long as they can.
1 in 300
Lifetime risk of developing MND
Up to 5,000
Adults living with MND in the UK at any one time
6 a day
People diagnosed with MND in the UK
2–5 years
Typical survival from first symptoms in ALS, the most common form
Figures from the MND Association.
Why genetic counselling matters here
Most cases of MND are not inherited. But some families do carry a genetic cause, and as testing becomes more widely available, more relatives face difficult questions: whether to be tested at all, what a result would and would not mean, and how to talk about it with the rest of the family.
Genetic counselling exists to help people work through exactly those questions, at their own pace and without being rushed. Specialist counselling capacity is limited, and demand is growing. That gap is where our first project began.