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

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

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-in-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

Sheenagh is 61 and has 3 adult children. She previously ran a boarding kennels, but gave this up to care full-time for her husband Jim. Ethnicity: white Scottish After her husband developed MND, Sheenagh became his full-time carer. Although this was challenging, she is grateful for that time together. Sheenagh has found adapting to life following his death difficult, but has pushed herself to try new things.

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