Liz is 59 and works as a community matron in supportive and palliative care. She is married and has an adult daughter. Ethnicity: white British. Liz found out about MND in her family when she was 20, after her mother was diagnosed. Although knowing that she could develop the disease has been a worry throughout her life, she feels her experiences have had a positive impact on her career in nursing.

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

Lillian is 55 and works as a civil servant. She is married. Ethnicity: white British Lillian knew she wanted to have pre-symptomatic genetic testing after finding out the gene variant linked to MND in her family. Although she received a positive result, she does not regret her decision, and is hopeful for research progress in the future.

• Inherited motor neurone disease (MND) - Family members with a positive pre-symptomatic genetic test resul

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

Sheenagh is 61 and has 3 adult children. She previously ran a boarding kennels, but gave this up to care full-time for her husband Jim. Ethnicity: white Scottish After her husband developed MND, Sheenagh became his full-time carer. Although this was challenging, she is grateful for that time together. Sheenagh has found adapting to life following his death difficult, but has pushed herself to try new things.

• Inherited motor neurone disease (MND) - Partners and family caregivers

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

John is retired, and previously worked as a project manager in IT. John has a long-term partner. Ethnicity: white British. John was diagnosed with MND in March 2018. Although his mother previously had the disease, he did not initially think it could be hereditary. John feels that knowing what to expect has helped him prepare for the future.

• Inherited motor neurone disease (MND) - People with inherited MND

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