We are delighted to announce that we have received funding from the Late Late Toy Show Appeal which will be used to establish a new programme to support Children & Youth Caregivers who are living with MND within their family unit. This programme which is the first of it's kind here, will develop and deliver Ireland‑adapted education, emotional wellbeing supports, and the YCare youth caregiving programme to help children and families affected by MND understand the illness, build resilience, and reduce isolation.
The first step in setting up this programme is a short survey that aims to understand the needs and experiences of youth and families supporting their loved ones affected by Motor Neurone Disease (MND) in Ireland. This information will be used to develop and adapt culturally relevant educational resources and support programming for children, families, and also health care providers.
The survey will ask you about your experiences and educational resources needed related to Motor Neurone Disease (MND). This survey will take approx. 10-20 minutes.
Your input will really help shape a better understanding of the needs of children, youth and health care professionals that assist you and your family.
If you are a parent, guardian or grandparent with children or young people involved in your care or the care of a family member, or if you are a health care professional looking after someone with MND, we would be grateful if you could take the time to participate.
Who should take part: Parents, Guardians or Grandparents of Children or Youth living with MND or Health Care Professional with an MND person in your care.
Deadline for the survey: 17th July 2026
Take the survey: Please click on the button below or scan the QR code relevant to your situation.
