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

Liz is 59 and works as a community matron in supportive and palliative care. She is married and has an adult daughter. Ethnicity: white British. Liz found out about MND in her family when she was 20, after her mother was diagnosed. Although knowing that she could develop the disease has been a worry throughout her life, she feels her experiences have had a positive impact on her career in nursing.

• Inherited motor neurone disease (MND) - Family members who have not had pre-symptomatic genetic testing

Lillian is 55 and works as a civil servant. She is married. Ethnicity: white British Lillian knew she wanted to have pre-symptomatic genetic testing after finding out the gene variant linked to MND in her family. Although she received a positive result, she does not regret her decision, and is hopeful for research progress in the future.

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

Paul is 48 and works as a police officer. He is married with three adult children. Ethnicity: white British. Paul lost his mother to MND in 2016. Although the family were told that it was an inherited form, Paul feels he has yet to fully process this. Paul has decided not to have pre-symptomatic genetic testing, although this decision is under continuing review.

• Inherited motor neurone disease (MND) - Family members who have not had pre-symptomatic genetic testing

Mary is 49 and works full time as an office manager. She has two children, who are 15 and 21. Ethnic background: white British Mary found out about inherited MND in her family after her father was diagnosed. She then was told that that her grandmother and great-aunt had also died of the disease. Although Mary worries about developing MND in the future, she tries to stay positive.

• Inherited motor neurone disease (MND) - Family members who have not had pre-symptomatic genetic testing