Progress update: 2022 achievements

16 January 2023

Childhood Dementia Initiative’s CEO, Meg Donnell, accepted the challenge to share just some of 2022’s biggest achievements in 2 minutes. Below is more information on progress made in 2022 to improve quality of life for children with dementia and their families.

Research and data

  • Our world-first research symposium brought over 75 researchers, families and health professionals together for the first time to tackle childhood dementia.
  • Australia’s government became the first in the world to dedicate research funding ($3 million) to childhood dementia. We were honoured to have this announced by Australia’s then Health Minister at our Symposium.
  • Research that focuses on multiple childhood dementia conditions in order to speed up treatments for children grew, with 7 projects of this kind initiated in Australia.
  • 120 researchers joined our Research Alliance to increase collaboration and share knowledge.
  • Childhood Dementia Initiative launched the Childhood Dementia Knowledgebase. This is an open-access database that provides deep data for researchers and clinicians that will help accelerate therapeutic development.

Advocacy and awareness

  • Media coverage on our calls for action had a combined reach of over 88.5 million people. Our social media reached over 2 million, which is just the tip of the iceberg. Broad awareness and interest continue to grow around the world.
  • In Australia, we presented at 17 conferences, connecting with experts and leaders in their fields. In many instances, this was the first time childhood dementia was included in those conference agendas.
  • We met with both the former and current Federal Health Ministers and other members of state and federal government and contributed to multiple policy consultations on topics that impact children with dementia and their families. 

Care and support

  • Over 500 people gave their time to attend our info sessions. 98% said this increased their understanding of childhood dementia.
  • We worked with UNSW to begin to understand the psychosocial impact of childhood dementia on families.
  • We created a world-first suite of information resources for health professionals and we continue to build more.
  • We now have over 50 Family Advocates who are working with us to ensure their voices, needs and experiences are finally heard by policymakers, in the media, and across the health sector.