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

Kirsty is 35 and works full time as an IT manager. Ethnicity: White British. Kirsty's grandmother and two uncles have been affected by MND and FTD. After having pre-symptomatic genetic testing, her mum was told that she does not carry the C9orf72 gene variant. Kirsty feels grateful that her immediate family will not be affected.

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

Harriet is 35 and works part time as a project manager. She is married with one child, who is two. When Harriet's mum and aunt were diagnosed with MND, she had pre-symptomatic genetic testing to inform decisions over having another child. She was told she carries the C9orf72 gene variant and is currently undergoing pre-implantation genetic testing.

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

Kelly is 30 and is married. She works full time as a Service Administrator. Ethnicity: White British Kelly's family has been affected by MND and FTD, caused by the C9orf72 gene variant. Kelly decided to seek pre-symptomatic genetic testing to make an informed choice on having children. After facing several challenges, she has received a negative result.

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

Hugh is 66 and before he retired, worked as an Ecologist. He has two adult children aged 29 and 35 and is widowed. Ethnicity: White British Hugh was diagnosed with MND aged 64. Because his aunt had also been affected, he had genetic testing, which failed to identify a gene variant associated with MND. Hugh's focus now is on making the most of life and finding ways to access the outdoors.

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

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

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