PURA Foundation Australia 

The Epilepsy in Australia Senate Inquiry is currently open, and this is a real opportunity for our PURA community to be heard. We are preparing a submission focused on PURA syndrome, and would really value input from families dealing with PURA epilepsy.
 

If you are willing, please send through anything you would like included. It can be short and simple. Dot points are fine.
Some ideas include (but all ideas are welcomed):
 

• Lived experience of epilepsy care
  What is life like for you right now?
  Seizures, safety concerns, hospital care, treatment burden, daily care needs
   

• Access to services and coordinated epilepsy care
  Hospitals, neurologists, specialists, NDIS, allied health, education.
  What has been hard to access or poorly coordinated?
   

• Support and NDIS
  Does the system reflect the complexity, risk, and lifelong nature of your child’s epilepsy condition?
   

• Impact on family and caregivers
  Sleep disruption, constant vigilance, wellbeing, work, income, mental health
   

You can message me directly or email through your thoughts.
mel.anderson@purafoundation.au

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You can also submit directly yourself - Closes 15th May

Submissions go straight to the government and personal stories carry real weight. They do not need to be long or formal. Please carefully read the Terms of Reference and requirements on this link below if you wish to submit personally.

 

https://www.aph.gov.au/.../Community.../EpilepsyinAustralia

 

Every voice matters. 

Mel Anderson
Director - Chair 
PURA Foundation Australia