Australian Senate inquiry into Epilepsy
This collection includes submissions to the Senate Inquiry into Epilepsy in Australia relating to confirmed developmental and epileptic encephalopathies (DEEs), probable or possible DEEs, and other severe childhood-onset epilepsies associated with developmental, cognitive or lifelong disability. The aim is to make these submissions easier for families, educators, therapists, clinicians, researchers and others with an interest in DEEs to find.
How to read a submission
Each submission listed below includes its official Senate submission number (for example, Sub11).
To read a submission:
Visit the Australian Parliament webpage for the Senate Inquiry into Epilepsy in Australia.
Open the list of published submissions.
Locate the submission using its submission number.
Please note: Diagnoses have been reproduced exactly as they appear in the original submissions. Some conditions may also be known by other names or may now be classified differently.
Sub08 - Name Withheld -severe epilepsy, multiple disabilities and a rare genetic condition
Sub11 - Name Withheld -NBEA-related epilepsy
Sub18 - Name Withheld -CSNK2B-related neurodevelopmental disorder
Sub32 - Name Withheld -Dravet Syndrome
Sub36 - Name Withheld - West Syndrome
Sub42 - Name Withheld -Doose Syndrome (myoclonic-atonic epilepsy)
Sub44 - Name -Withheld - probable DEE (diagnosis not specified)
Sub45 - Name Withheld - Dravet Syndrome
Sub49 - Name Withheld - possible DEE (insufficient information)
Sub52 - Name Withheld - possible DEE (insufficient information)
Sub54 - Name Withheld-Lennox-Gastaut Syndrome
Sub55 - Name Withheld - Lennox-Gastaut syndrome
Sub56 - Name Withheld -probable DEE - features suggest EE-SWAS/CSWS, but diagnosis is not explicitly stated
Sub70 - Name Withheld - unspecified DEE
Sub83 - Name Withheld -Panayiotopoulos Syndrome and later Continuous Spikes and Waves in Sleep (CSWS)
Sub85 - Name Withheld -Dravet syndrome
Sub97 - Name Withheld - Lennox Gastaut Syndrome with an underlying genetic cause of RNU4-2 (RENU) syndrome
Sub100 - Name Withheld - rare genetic epilepsy disorder known as PCDH19
Sub101 - Name Withheld - a poem: Those cheeks - An insight into life with a child with a DEE
Sub103 - Name Withheld - extremely rare chromosomal deletion of 2q23.3-2q24.2
Sub122 - Name Withheld - West Syndrome
Sub170 - Name Withheld - NASA Syndrome, an extremely rare genetic disorder affecting approximately 20 individuals worldwide
Sub177 - Name Withheld - unspecified DEE
Sub178 - Name Withheld - DEE-SWAS/EE-SWAS
Sub187 - Name Withheld - Dravet Syndrome
Sub191 - Dannielle Murfet - Congenital Bilateral Perisylvian Syndrome, Epilepsy, Global Developmental Delay
Sub208 - Mrs Julie Debono - Possible DEE / diagnosis pending
Sub213 - Miss Kymberley Saunders - Early infantile developmental epileptic encephalopathy
Sub216 - Name Withheld - possible DEE but insufficient information (rare genetic depletion disorder)
Sub217 - Name Withheld - Tuberous Sclerosis Complex (TSC) with infantile spasms and drug-resistant epilepsy
Sub218 - Mr James Farrell - SCN1A-related Developmental and Epileptic Encephalopathy (Dravet Syndrome phenotype)
Sub220 - Ms Amanda Ballan - Infantile spasms; DEE-SWAS
Sub222 - Name Withheld - Lennox-Gastaut Syndrome
Sub223 - Name Withheld - possible DEE (insufficient information)
Sub226 - Name Withheld - Dravet Syndrome - de-novo mutation of the SCN1a gene
Sub227 - Mr Jason Amos - Dravet Syndrome
Sub235 - Victoria P - SYNGAP1
Sub244 - Name Withheld - SYNGAP1 Syndrome
Sub250 - Name Withheld - Dravet syndrome caused by SCN1A mutation
Sub251 - Name Withheld - Dravet Syndrome
Sub254 - Name Withheld - Lennox Gastaut Syndrome
Sub259 - Name Withheld - SCN1A gain-of-function leading to neonatalonset DEE with arthrogryposis and movement disorder
Sub261 - Name Withheld - unspecified DEE
Sub263 - Name Withheld - GLUT1 Deficiency Syndrome caused by a mutation of the SLC2A1 gene
Sub268 - Brigitta Seiler - unspecified DEE
Sub272 - Name Withheld - Myoclonic Atonic Epilepsy
Sub273 - Name Withheld - Drug-resistant focal epilepsy due to focal cortical dysplasia (FCD), treated with epilepsy surgery
Sub277 – Name Withheld - Childhood-onset drug-resistant epilepsy – severe epilepsy, including behavioural and educational challenges, daily seizures into adulthood, epilepsy surgery assessment, VNS, and the need for 24/7 supported living
Sub278 - Name Withheld - KCNQ2-DEE
Sub292 - Name Withheld - Electrical Status Epilepticus in Sleep (ESES)
Sub293 - Michael and Tracey Curtis - post-viral encephalitis with secondary epilepsy, resulting in drug-resistant epilepsy, cognitive impairment, executive dysfunction and long-term disability
Sub301 - Name Withheld -bacterial meningitis resulting in acquired brain injury, drug-resistant epilepsy, cerebral palsy and complex disability
Sub302 - Joylene Donovan - Dravet syndrome (SCN1A)
Sub303 - Ms Milanie Gonato -CYFIP2-related DEE65
Sub305 - Name Withheld - CACNA1A-related DEE42
Sub307 - Name Withheld - Genetic DEE
Sub311 - Name Withheld - suspected seizure disorder (cortical malformation)
Sub314 - Name Withheld -15q11.2 microdeletion syndrome
Sub315 - Name Withheld - CACNA1A-related DEE
Sub316 - Name Withheld - DEE caused by a rare neurometabolic disorder
Sub318 - Name Withheld - SCN1A-related DEE
Sub319 - Dr Brad Ridout - EE-SWAS (Epileptic Encephalopathy with Spike-Wave Activation in Sleep)
Sub324 - Name Withheld - Doose syndrome
Sub328 - Name Withheld - SCN1A-related epilepsy with developmental regression
Sub334 - Ms Kindalon Kastrissios - possible SCN1B-related genetic epilepsy
Other DEE-related submissions
Sub79 - PURA Foundation Australia
Sub129 - Developmental and Epileptic Encephalopathies Research (DEER) Consortium - “A devastating burden, largely unseen.”
Sub175 - SCN2A Australia - SCN2A-related disorders
Sub241 - Tuberous Sclerosis Australia
Sub144 - Foundation for Angelman Syndrome Therapeutics Australia Limited
Sub147 - Mito Foundation
Sub159 - SLC6A1 Kids
Sub173 - The Kids Research Institute Australia - brings together research on how common DEEs are, their impact on quality of life, the experiences of caregivers, the economic costs, and emerging Australian survey data to demonstrate the significant burden DEEs place on children, families and health systems
Sub197 - Genetic Epilepsy Team Australia - this submission includes a link to a companion video submission featuring the stories of families across Australia living with DEEs: https://www.youtube.com/watch?v=29lPDfyjIKU
Sub255 - DEE Roundtable 2026 Steering Committee
Sub270 - Syngap Research Fund Australia
Other submissions of interest
Sub63 - Dr Gabriel Dabscheck - “rebate for EEG is so bad that very few people offer EEG services for children”.
Sub71 - Hemispherectomy Foundation Australia - hemispherectomy and hemispherectomy as a treatment option for severe epilepsy.
Sub76 - Animal Therapies Ltd - seizure assistance dogs, therapeutic animal interaction and equine-assisted therapy
Sub106 - AASW Submission - psychosocial, access and systems issues for people living with epilepsy and their families
Sub125 - Australia and New Zealand Child Neurology Society - “There is limited access to essential comprehensive epilepsy care services for CYP in Australia, leading to suboptimal seizure management, further reducing quality of life.”
Sub133 - Murdoch Children's Research Institute - the urgent need for funded access to rapid genomic testing for all affected Australians.
Sub138 - PCA Submission - improving palliative care for people with severe and complex epilepsy.
Sub140 - Fostering Hope - children and young people with epilepsy or seizure disorders who are living in foster, kinship or informal care.
Sub154 - National Centre of Excellence in Intellectual Disability Health - overlooked health inequalities
Sub188 - Name Withheld - detailed account of complex drug-resistant epilepsy that began in childhood and its impact on the person into adulthood, and on their primary caregiver
Sub221 - Dr Sarah Calvert - a paediatric neurology fellow describes the pressures facing families and clinicians and calls for better resourced, coordinated care for children with epilepsy, particularly those with complex epilepsy
Sub275 - Ms Tina Furse - a clinical nurse consultant highlights the essential role epilepsy nurse specialists can play in child and family care
Sub279 - Name Withheld - paediatric palliative care
Sub320 - Name Withheld - describes decades of nocturnal seizures, repeated misdiagnosis, drug-resistant epilepsy, and finally receiving a genetic diagnosis after almost 40 years
Sub327 - Royal Australian College of General Practitioners
Sub329 - Australian Academy of Health and Medical Sciences