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read moreFormer Australian Rugby League captain and State of Origin player, Wally Lewis has joined a 20-strong delegation to Canberra calling for CTE (chronic traumatic encephalopathy – a form of dementia) services, education and awareness raising.
The delegation representatives from Sydney, Newcastle and Canberra includes people living with probable CTE, carers and researchers who met with parliamentarians in Canberra to share their experiences as they attended meetings and events at Parliament House, all wearing bright, orange t-shirts emblazoned with the message – 'You only get one brain'.
Lewis revealed in an interview with 60 Minutes that he is battling a devastating neurodegenerative condition - diagnosed with ‘probable CTE’.
CTE is a type of dementia that was first identified in 1928, when a group of boxers were described as having ‘punch drunk syndrome’, also referred to as ‘dementia pugilistica’. The condition can be provisionally diagnosed by clinicians but can only be definitively confirmed by tissue examination after death. CTE may affect brain function over time and can result in changes in mood, personality, behaviour, and cognitive function. Research has identified an increasingly strong causal link between repeated head injuries and chronic traumatic encephalopathy.
Lewis shared “You only get one brain" and adds “I’m sharing my experience of living with probable CTE and proudly working with the Concussion and CTE Coalition, calling for the Federal Government to fund support services and a national awareness and education program.
“We need to teach the players from the grassroots level to play the game more safely and we need to equip the parents and teachers around them with the confidence and information they need to support our kids. It’s the subconcussion risk that needs to change as much as concussion.
“We have come a long way since back when I played, but I think we still have a long way to go.”
Kayleen Doyle, delegation representative and Founder and Director, Connecters Australia notes “We are passionate about raising awareness with all politicians and advocating for change to help others – for now and for future generations.”
The Concussion and CTE Coalition (Dementia Australia; Brain Foundation; Connecters Australia; Queensland Brain Institute, The University of Queensland and Dr Rowena Mobbs, Mater Hospital Sydney) have developed a joint Position Statement and have called for federal support in the May budget.
In a pre-budget submission the Coalition is calling for a national 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.
Carl Cincinnato, Brain Foundation said a national awareness and education program was needed in our schools to increase awareness and understanding about concussion, CTE and brain health.
Cincinnato added “Teachers and parents must have access to reliable information and resources, ensuring they feel well-equipped, supported, and confident in making decisions regarding the brain health of Australian children.”
Maree McCabe AM, Chief Executive Dementia Australia said the Coalition budget priorities were developed as a response to some of the recommendations in the Senate Inquiry report, ‘Concussions and repeated head trauma in contact sports’ handed down in September last year.
“It’s not just a sports issue. There are several different populations at risk of CTE, including domestic and family violence survivors, and military personnel.
“People impacted by CTE tell us there isn’t enough support available, so we are calling for the Federal Government to back a national support program,” McCabe said.
Dr Rowena Mobbs, Mater Hospital Sydney, said participants in an existing support group program, Concussion Connect in Sydney, have described it as transformative.
“The Concussion Connect model could be introduced nationally with funding support,” Dr Mobbs advised.
“Participants report feeling their concerns are validated and they enable social connections for families to share experiences and support each other.
“Research into this new model of care will be led by the Queensland Brain Institute, University of Queensland.”
Robin McGilligan, a delegation representative who is living with probable CTE and Australian CTE Biobank Ambassador said Concussion Connect has been totally life changing for him and shared “Until I attended the group, I had been incredibly embarrassed and ashamed of what was happening to me.
“I knew that these people understood what I was saying, and they were so super supportive. The whole experience was incredibly powerful and immensely healing.”
At a Parliamentary Friends of Dementia event attended by parliamentarians and sector stakeholders in Parliament House yesterday, Wally Lewis was joined in a panel discussion by McGilligan and Dementia Australia Dementia Advocate Lynn McGregor to be facilitated by Dementia Australia Ambassador and acclaimed sports journalist Pat Welsh.
For support and information please contact Dementia Australia; Brain Foundation; Connecters Australia
1st February 2024 - Australian Institute of Sport launches new concussion guidelines to align with New Zealand and UK
14th November 2023 - The Journal of Science and Medicine in Sport offers free access to concussion studies
6th September 2023 - Senate Inquiry delivers 13 recommendations over sport concussions and repeated head trauma in contact sports
5th August 2023 - AFL fines Port Adelaide $100,000 over concussion breach
21st July 2023 - FIFA employs ‘concussion spotters’ for the first time in a Women’s World Cup
16th June 2023 - UniSA research suggests extended recovery times may be needed following sports concussion
27th March 2023 - Stirling Mortlock invests in EyeGuide concussion technology
14th March 2023 - More than 60 former players involved in class action launched against AFL over concussions
27th February 2023 - AFL to face class action from former players impacted by effects of concussion
25th October 2022 - AFL apologises to past players over past concussion research
1st September 2022 - James Cook University study focuses on concussion in women’s contact sports
2nd August 2022 - Warringah Rats Rugby Union among sporting clubs to acquire latest concussion technology
4th February 2022 - NFL legend Brett Favre involved with Melbourne trials of world-first concussion treatment
8th October 2021 - Australian Institute of Sport leads major project examining concussion
4th February 2021 - Rhino Australia launches Innovative sports robot to reduce football training concussions
11th January 2021 - Study finds impacts of AFL players concussion last longer than previously thought
4th July 2019 - Rugby league players considering class action over NRL’s approach to concussion
12th February 2019 - Concussion in Sport Australia initiative launches position statement and toolkit
20th December 2017 - New South Wales Institute of Sport to introduce new concussion test for athletes
11th July 2017 - UQ researchers to embark on groundbreaking study on athlete concussions
24th March 2017 - NRL takes hard line on concussions with record fines for three clubs
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