Louisa is in her 30s. She is married and has one young child. She works as a healthcare professional. Ethnicity: white British. Louisa's grandma died of MND when she was a teenager. Her mum recently developed MND and frontotemporal dementia caused by the C9orf72 gene variant. Louisa hasn't yet decided whether to have genetic testing; for now, she emphasises making the most of life.

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

Sam was told about MND in the family after a relative, who had been diagnosed, had a genetic test. Finding out about the C9orf72 gene variant was more of a bombshel than expected. Sam is considering whether to have pre-symptomatic genetic testing.

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

Angi is 53 and works part-time as a cleaner in a school. She is married and has a son, Joe, who is 25. Ethnicity: White British. Angi has lost her father, mother and sister to MND. Although she would like to know what has caused the disease in her family, Angi does not want to find out her own genetic status; she would rather deal with it if it happens.

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

William is 40 and is a medical worker. He is married with two young children. Ethnicity: White British William's dad and grandad died of MND, and he found out at university that there could be a genetic cause of the disease. Although this has been in the back of his mind over the years, he has not sought further support or pre-symptomatic genetic testing.

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

Joe is 25 and works full time as a plumbing and heating engineer. Ethnicity: white British. Joe's grandfather developed MND when his mum was young, and in 2016 his grandma and auntie died of the disease. Joe would be open to learning more about MND but is not interested in genetic testing himself; he would rather deal with it if it happens.

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

Adam is 27 and works full-time as a writer. Ethnicity: British-Persian Adam's mum was diagnosed with MND in May 2020, which he discovered to be caused by the C9orf72 gene variant. Since finding out, Adam has been made aware of some symptoms he is experiencing and is currently undergoing investigations himself.

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

Georgia is 26 and works full time as a solicitor. She is white British. Georgia first found out about MND in her family after her nan and great-uncle developed the disease. She has become more aware of the implications of this since they have died, but tries to put MND out of her mind, and make the most of every day.

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

Robyn is 35 and is married with one child, who is four. She works full time. Ethnicity: white Scottish. Robyn's dad Jim died of MND in 2018, after living with the disease for around 14 years. Since he has died, Robyn has suffered from health anxiety. Although she sometimes worries about developing MND, she has decided not to have genetic testing at present.

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

Richard is 46 and works as a finance director. He is married and has two teenage children. Ethnicity: white British. Brief Outline: Richard found out about inherited MND in his family after his mother was diagnosed with the disease and had a genetic test. Richard has developed a positive mindset to cope with his situation, and has decided not to have pre-symptomatic genetic testing.

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

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