Join the calls for more action on childhood dementia

Add your name to this petition to get the Australian government’s attention and action directed to childhood dementia. This petition will be shared with key decision-makers and MPs to demonstrate community concern for children and families affected by this devastating disease.

Childhood dementia affects as many children as better-known diseases like cystic fibrosis but attracts little research. For instance, the Australian government’s medical research funding body, the NHMRC, dedicated 29 times more to cystic fibrosis than to childhood dementia from 2018 to 2020. Of the 70+ genetic disorders identified as causing childhood dementia, fewer than 5% have treatments. 

It’s unacceptable that childhood dementia attracts little research, funding or support. Parents are being told they have no other option than to watch their children slowly die. Children suffer declines similar to those experienced by adults with dementia: they lose their memories, concentration, speech and ability to move. They suffer from confusion, distress, hallucinations and personality changes. Most die before reaching adulthood. 

Childhood Dementia Initiative is calling for urgent change:

  • More research funding for childhood dementia
  • A new approach to research that would accelerate progress. This includes research on multiple disorders at the same time
  • Improved care and quality of life for children with dementia

“An end to childhood dementia would be a dream come true. For any parent with a child with a neurodegenerative disease, it’s all that we could ever wish for."
-Bobbie, mum to Tayla who suffers from childhood dementia and can no longer walk or speak.

Sign the petition for action 

Let the Australian government know you’d like more action directed to childhood dementia.