We then heard from a panel session of people with lived experience of neurological conditions who discussed their stories and the importance of investment in research and ways to improve access to treatments and condition management.

“The NDIS currently doesn’t cater to people with neurological conditions and symptoms.” – Shelly Parer, who lives with MS (multiple sclerosis) shared her trouble accessing services offered by the NDIS.

“Research is really important to people like me and gives a sense of urgency and hope.” – Craig Gillespie who lives with Parkinson’s emphasised the importance of funding for research.

“For families right now, we need NDIS pathways, support and better opportunities for treatments.” – Teresa Lloyd whose sons live with Childhood Dementia urges changes to include support to access the NDIS.

“We cannot get access to the NDIS because Phil is over 65, this is discrimination.”– Sarah Sharp whose husband lives with MND, highlighted the exclusion of elderly disabled people from accessing the NDIS.

Professor Pamela McCombe, former President of the Australian & NZ Association of Neurologists (ANZAN) discussed the opportunity for Australia to be a leader in neurological research and the need to fast-track access to drugs, medical technology for neurological conditions and the establishment of a national brain bank.

Dr Tarun Dua, Unit Head of Brain Health at the World Health Organization (WHO) spoke in a short video on the Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders.

Next, Assistant Minister for Health & Aged Care, Ged Kearney addressed the Australian Government’s response to the World Health Organization’s Global Action Plan on neurological disorders, funding for research & benefits of having a blueprint for neurological conditions.

Greens Senator, Jordon Steele-John spoke about his concerns regarding NDIS reforms and Dr Anne Webster, Shadow Assistant Minister for Regional Health, shared the Coalition’s plans for improving the health and wellbeing of people living with neurological conditions including access to better care and funding for research.

Neurological Alliance Australia Chair Rohan Greenland launched the Count Us In campaign which aims to drive meaningful change by raising awareness, advocating for policy reforms, and empowering people affected by neurological conditions.

Then Georgina Carr, CEO of the Neurological Alliance, UK, shared current projects, campaigns and their response to the World Health Organization’s Global Action Plan on Neurological Disorders.

Minister for the NDIS, Bill Shorten spoke on strengthening the NDIS and the benefits of having a Neurological Working Group in the NDIA.

In closing The National Summit for Neurological Conditions, Neurological Alliance Australia Chair Rohan Greenland reiterated our commitment to establishing a Taskforce on Neurological Conditions and ensuring inclusion in health, disability and aged care policies moving forward.

“We will move heaven and earth to make your voice heard and to ensure you are counted in.”