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

JW is 68 and is a retired teacher. He has 2 adult children and is widowed. Ethnicity: white British JW's wife Jean rapidly developed difficulty talking in 2010 and was later diagnosed with MND, caused by the C9orf72 gene variant. JW cared for Jean until her death in 2013. He remains hopeful for research progress and a future treatment or cure.

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

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

Helen is 45 and works as a Personal Assistant. She is married and has two children, who are aged 13 and 14. Ethnicity: White British. Helen found out about MND in the family after her mother-law was diagnosed. Although one of her main concerns is how to tell her children about the disease, she is hopeful that the outlook for future generations will be different to what it is today.

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

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

Anthony is 45 and works as a partner in an equine business. He is married and has three children who are 10, 7 and 4. Ethnicity: white British. Anthony decided to have pre-symptomatic genetic testing after finding out about the C9orf72 gene variant in his family. He received a positive result, but tries to stay positive by following research developments around MND and taking part in studies.

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