Today, Australian sporting legend, and Dementia Australia Ambassador, Wally Lewis AM addressed the National Press Club of Australia (NPC) in Canberra to share his experience of living with probable CTE, and to call on the Australian Government to invest $18M to fund CTE awareness and support programs recommended by the Concussion and CTE Coalition.
Mr Lewis was joined at the event by recently retired AFL Premiership player Nathan Murphy, who at 24 years of age bravely announced he would be hanging up his boots after multiple serios concussions, including in last years' AFL Grand Final. Nathan's decision came after medical advice suggesting that his migraines, panic attacks and anxiety may be linked to concussions which occurred throughout his playing career.
CTE (chronic traumatic encephalopathy) is the only preventable form of dementia, and some estimates suggest thousands of people are impacted. CTE affects brain function over time and can result in changes in mood, personality, behaviour, and cognitive function. Funding is required for research to better understand CTE, a condition caused by repeated traumatic brain injuries.
In his speech Mr Lewis said: "Imagine a life where the tapestry of memories that define your very essence begins to unravel."
"The threads of names, faces, and cherished moments slip away, leaving behind a canvas of uncertainty," Mr Lewis said.
"I am living with the constant fear and anxiety that I'll let people down. This is my reality and the reality for all those living with dementia. One thing we do know is that CTE is the only form of dementia that is preventable, and we only get one brain.
"My call is for the Australian Government to back this cause and provide federal funding for these two initiatives that will start the change and will provide hope for the future. We owe it to our kids."
The Concussion and CTE Coalition's Joint Pre-Budget Submission calls for $18 million over three years to fund a national pilot program of support services for people impacted by CTE, and a national awareness raising and education program in schools to protect the brains of Australian children.
Maree McCabe AM, CEO of Dementia Australia said these priorities were developed as a response to recommendations from the Senate Inquiry Report into, 'Concussions and repeated head trauma in contact sports', handed down in September 2023.
"Concussion and CTE is not just a sports issue. Many groups are at risk, including domestic and family violence survivors and military personnel," Ms McCabe said.
"People impacted by CTE tell us that there isn't enough support. We are calling for government investment to raise awareness of this important issue and support those living with probable CTE, their families and carers."
Dr Rowena Mobbs of Mater Hospital Sydney, who diagnosed Mr Lewis with probable CTE, said participants in the existing Concussion Connect support program have found it transformative, and that this model should be expanded through investment in a national pilot program.
"Participants report feeling their concerns are validated. The program enables social connections for families to share experiences and support each other," Dr Mobbs said.
"As Wally said, we only get one brain. We need to do all we can to increase awareness and reduce the incidence and impact of CTE."
You can read Wally Lewis' National Press Club address here.
The Concussion and CTE Coalition, (Dementia Australia, Brain Foundation, ConneCTErs, Associate Professor Fatima Nasrallah of the Queensland Brain Institute at The University of Queensland, Dr Rowena Mobbs of Mater Hospital Sydney are working together to promote awareness and understanding of Chronic Traumatic Encephalopathy (CTE) and its impact on individuals, families and communities.
