Niki is 66 and prior to her retirement, worked as a Speech and Language Therapist. She recently lost her husband Stuart, with whom she has two adult children. Ethnicity: White British. Niki cared for her husband Stuart over the 5 years of his illness. Questions remain over what his diagnosis could mean for other relatives. Although Niki finds this a difficult position to be in, she plans to keep an open conversation with their children.

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

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

Alison is 63 and is married with two adult children. Before she retired due to health reasons, she worked as a nurse practitioner. Ethnicity: White British. Alison was diagnosed with MND in 2012. Due to her family history, she was tested for the C9orf72 gene variant, which came back negative. Alison questions why she wasn't offered further genetic testing, which may provide useful information for relatives.

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

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

At the time of the interview Ken was 59 and Chris was 60, with three adult children. Ken worked as a soft furnishing workroom manager before retiring. Chris retired when she reached 60 to help care for Ken. Ethnicity: white British. Ken was diagnosed with MND in 2006, around 10 years after his brother died of the disease. The family did not know the condition could be inherited, so his diagnosis was a shock. Ken was interviewed through his wife Chris.

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

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

Lizbeth is 51 and works as a young person's counsellor. She is married and has three children, aged 17, 22 and 24. Ethnicity: White Welsh. Lizbeth has lived with MND from a young age, losing her grandmother and mother to the disease. She had pre-symptomatic testing and was told she has the C9orf72 gene variant. Coming to terms with this was harder than she imagined, but it no longer defines her.

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