Paul is 48 and works as a police officer. He is married with three adult children. Ethnicity: white British. Paul lost his mother to MND in 2016. Although the family were told that it was an inherited form, Paul feels he has yet to fully process this. Paul has decided not to have pre-symptomatic genetic testing, although this decision is under continuing review.

• Inherited motor neurone disease (MND) - Family members who have not had pre-symptomatic genetic testing

Mary is 49 and works full time as an office manager. She has two children, who are 15 and 21. Ethnic background: white British Mary found out about inherited MND in her family after her father was diagnosed. She then was told that that her grandmother and great-aunt had also died of the disease. Although Mary worries about developing MND in the future, she tries to stay positive.

• Inherited motor neurone disease (MND) - Family members who have not had pre-symptomatic genetic testing

Lexi is in her 40s. She is married and works full time. She is white Scottish. Lexi's grandfather died of MND, but it wasn't until her mother was diagnosed more recently that Lexi was told she could be affected in the future. Lexi has decided not to seek pre-symptomatic genetic testing, and instead prefers to make the most of life.

• Inherited motor neurone disease (MND) - Family members who have not had pre-symptomatic genetic testing

Karen is 59 and has one adult child. She is retired, but previously worked as head of service in children's social care. Ethnicity: white British. Karen became aware of inherited MND in her family after her mother and uncle were diagnosed. Karen has decided not to have pre-symptomatic genetic testing, though has made positive changes to her life to make the most of each day.

• Inherited motor neurone disease (MND) - Family members who have not had pre-symptomatic genetic testing