Liz was formerly a classroom support worker in a school for children with special needs. At the time of the interview she was divorced with 2 children aged 18 and 17. Ethnicity: white British. Liz was diagnosed with inherited MND in 1998, the sixth member of her family to be diagnosed. She found it important to have a positive mindset and show her children that MND is not the end of the worl.

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

Liz was formerly a hydrologist (environmental scientist). She and her husband moved back from New Zealand after she was diagnosed to be closer to family. Ethnicity: white British. Liz was diagnosed with an inherited form of MND in 2004. Because her father and uncle had died of the condition, she knew what to expect, which was both helpful and difficult.

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

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

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

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

David is 62 and before giving up his job, worked as a self-employed handyman and bicycle mechanic. He is married with two adult children, who are 27 and 29. Ethnicity: White British. David lost his mother to MND as a teenager. After developing symptoms in 2019, he was diagnosed with MND caused by the C9orf72 genetic variant. David tries to keep up with research and hopes that having information will help members of his family make informed choices.

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

Dani is 69 and is a retired garden designer. She has two adult children, who are 42 and 45. Ethnicity: European New Zealander Dani was diagnosed with MND at 62 and was the fifth of her siblings to develop the disease. She is involved in a clinical trial targeting the SOD1 gene and hopes that this treatment and others using similar techniques will benefit future generations.

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

Sarah is 55. She is married with two adult children, who are 20 and 22. Before she retired, she worked as a pediatric intensive care nurse. Ethnicity: white British. Sarah was diagnosed with MND in 2019. Although her father had the disease previously, she only recently discovered that she has an inherited form through genetic testing. Sarah is hopeful that this information will help future generations of the family.

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

Stuart is 69 and is married with two adult children. Before he retired, he worked as a pharmaceutical company director. Ethnicity: White Scottish Stuart was told he had MND around two years after developing symptoms, a diagnosis he has found hard to accept. Because he lost his mum to the disease, he was encouraged to have genetic testing, which came back inconclusive.

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

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