Findings and opportunities for action shared with researchers

10 February 2021

Childhood Dementia Initiative's Head of Research, Kris Elvidge PhD, presented at WORLD Symposium on Wednesday 10 February. The Symposium is the annual international research conference for lysosomal diseases. Around 21% of individuals with childhood dementia suffer from a lysosomal storage disorder.

“The opportunity to present at the WORLD Symposium, is a big win for our cause," said Kris. “The presentation will help to raise awareness of the disorders which cause childhood dementia among researchers and clinicians and highlight opportunities to collaboratively research childhood dementia and accelerate the development of new, effective therapies."

Kris shared with researchers findings from the Childhood Dementia Initiative's burden of illness study, Childhood Dementia in Australia. This study revealed the significant social and economic impacts of childhood dementia and its previously unrecognised collective incidence.

Childhood Dementia Initiative is challenging the world to think differently about the 70+ disorders which cause childhood dementia. By considering these disorders as a collective, the Initiative is working to facilitate collaborative research across multiple disorders. This will create economies of scale and efficiencies in all aspects of research and speed up progress to urgently needed treatments.

Due to COVID-19, participants presented posters in video format and then answered questions. You can view Kris's 'poster' here.

Lysosomal storage disorders which lead to childhood dementia:

Lysosomal disorders of lipid metabolism and transport 

  • Combined Saposin (Prosaposin) Deficiency
  • Farber Disease
  • Gaucher Disease (Type 2)
  • Gaucher Disease (Type 3) 
  • Globoid Cell Leukodystrophy (Krabbe Disease)
  • GM1 Gangliosidosis (Type 1 and 2)
  • GM2 Gangliosidosis - AB Variant 
  • GM2 Gangliosidosis (Tay Sachs Disease)
  • GM2 Gangliosidosis (Sandhoff Disease)
  • Metachromatic Leukodystrophy
  • Multiple Sulfatase Deficiency
  • Niemann-Pick A
  • Niemann-Pick C
  • Saposin A Deficiency
  • Saposin B Deficiency
  • Saposin C Deficiency

Other lysosomal diseases

  • Neuronal Ceroid Lipofuscinoses (NCLs or Batten Disease); 14 subtypes (except those that are adult onset CLN 4, 11, 13 )
  • Sialic Acid Storage Disease


  • Alpha-Mannosidosis
  • α-N-acetylgalactosaminidase Deficiency (Schindler Disease (Type I))
  • Aspartylglucosaminuria (AGU)
  • Beta-Mannosidosis
  • Fucosidosis (Type I and II)
  • Galactosialidosis (Cathepsin A Mutation)
  • Mucolipidosis Type I (Sialidosis)
  • Mucolipidosis (Type II) (i-Cell Disease)
  • Mucolipidosis (Type IV)


  • MPS I (Hurler Syndrome)
  • MPS II (Hunter Syndrome)
  • MPS III (Sanfilippo Syndrome)
  • MPS VII (Sly Syndrome)

To support the Initiative's important work to end childhood dementia, please donate now