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

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

Maggie is 68 and is a retired paediatric nurse. She is married with two adult children who are 34 and 43. Ethnicity: white British Maggie found out about MND in her family when her brother was diagnosed, 30 years after their mum developed symptoms. Although she was initially reluctant to pursue genetic testing, she recently found out that she does not carry the C9orf72 gene variant.

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

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

Calum is 26 and works as a legal assistant. He is white British. Calum's aunt and father died of MND, caused by the C9orf72 gene. After being told that he may be at risk, Calum decided to have pre-symptomatic genetic testing. Although he received a positive result, he feels better able to plan for the future.

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