Inherited motor neurone disease (MND)

• Overview
• Finding out about inherited MND in the family
  • Finding out about inherited MND in the family
  • Finding out the name of the gene variant in the family
  • Frontotemporal dementia (FTD): Understandings and experiences
• Knowledge and information around inherited MND
  • Seeking information on inherited MND
  • Understanding genetics in inherited MND
• Living with an inherited form of MND
  • Being diagnosed with an inherited form of MND
  • Genetic testing after a diagnosis of MND
  • Sharing genetic test results after a diagnosis of inherited MND
  • Adapting to life with MND: Attitudes towards and impact on life
  • Care, support and living well with inherited MND
• Living with an increased genetic risk of MND
  • The emotional and psychological impact of living with genetic risk
  • Times when worries about inherited MND come to the surface
  • Ways of coping with worries around inherited MND
  • Attitudes to life, priorities and perspectives on living with genetic risk
  • Professional support and monitoring (including after genetic testing)
  • Living with an increased genetic risk: Preparing for the future
• Pre-symptomatic genetic testing for inherited MND
  • Deciding whether to have pre-symptomatic genetic testing: Reasons for wanting to know
  • Deciding whether to have pre-symptomatic genetic testing: Reasons for not wanting to know (yet)
  • Talking about genetic testing decisions with family, friends, and healthcare professionals
  • Having genetic counselling before pre-symptomatic genetic testing
  • Having the blood test and waiting for the results
  • Receiving a negative pre-symptomatic genetic test result
  • Receiving a positive pre-symptomatic genetic test result
  • Sharing pre-symptomatic genetic test results with family, friends and others
• Making decisions around having children in families affected by inherited MND
  • Having children in families affected by inherited MND: past experiences and future plans
  • Options when having children in families affected by inherited MND: Genetic testing and pregnancy
• Caring for a relative with inherited MND
  • Providing care and support to a relative with inherited MND
  • Impact of caregiving on family carers
• Family communication, relationships and support in inherited MND
  • Talking about inherited MND in the family: differing perspectives
  • Telling children about the family history of inherited MND and genetic risk
  • Telling partners about inherited MND in the family
  • Finding support around inherited MND
• Research and drug trials in (inherited) MND
  • Research in MND: views and experiences
  • Volunteering, raising awareness and fundraising
• Messages to others
  • Messages to other families affected by inherited MND
  • Messages to healthcare professionals: Living with inherited MND and genetic testing
  • Messages to healthcare professionals: Care and support for families living with MND
• Glossary
  • Glossary and explanation of key terms
• People's Profiles
  • People with inherited MND
  • Family members who have not had pre-symptomatic genetic testing
  • Family members with a positive pre-symptomatic genetic test result
  • Family members with a negative pre-symptomatic genetic test result
  • Partners and family caregivers
• Resources and Information
• Credits