Heads Together for Brain Injury

Hiya Charlee here,

Some of you guys in the Heads Together Young Adults community might know me as CJ, sorry for any confusion!

Almost 6 years ago when I got my injury fighting brain cancer I didn’t really feel like Charlee anymore so I decided to go by CJ instead.

Now I’m 5 years clear of cancer and finally in remission, finishing up my university and despite all the hardships and challenges that still come my way I want to be me again!

Excited to be a new Lived Experience Storyteller, and for the Heads Together community to witness the relaunch of me as Charlee!

Talk soon

Getting excited for another awesome Family Camp weekend in just a few weeks! Caught up with our incredible volunteer team last night for orientation and we're all looking forward to a super fun weekend for our Believe it Not theme this year!

For more information about this great program, please call us on 0493 067 038 or email [email protected]

Friendships after stroke

A stroke changes your life in ways you never expect. It’s not just the fatigue, mobility challenges, or communication hurdles, it’s how the world around you shifts. People become unsure of what to say or how to act, like they’re suddenly walking on eggshells.
But underneath everything, I’m still me. Same humour, same loyalty, same need for connection, just navigating life differently now.

What I value most are the mates who get that. My closest friend knew me before and after the stroke, and they don’t treat me like I’m fragile. He adapts without making things awkward. No bubble wrap, no weirdness, just two mates hanging out, talking rubbish, and keeping things normal. That normality means more than anyone realises.

Recovery is unpredictable. Fatigue hits out of nowhere, mobility slows things down, and sometimes plans fall apart. That can make you feel guilty, but if something is out of your control, it’s out of your control. What matters is effort, communication, and showing up however you can.

Friendship after stroke looks different, but it’s clearer. I know who sees me—not the wheelchair, not the fatigue, but me. Connection isn’t about perfect circumstances; it’s about understanding, flexibility, and genuine care.
Thanks for listening peeps, talk soon
James

As always, the amazing Ability Team did some great brainstorming about the different types of technology they use to make life easier, better and more organised. And our wonderful Lived Experience Student Advisor, Charlee turned it into a cool visual we wanted to share.

She will be developing some resources to assist young people with brain injuries and their families navigate the complex world of technology, so stay tuned for more....

Its been a super busy month at Heads Together with lots of great opportunities for the voices of lived experience to drive understanding, and improve resources and supports for young people with brain injuries and their families.

We're so proud that we have advocated hard for paid lived experience consultation opportunities and that our wonderful research partnerships are making such positive progress.

Seeing the power of bringing lived and learned experience together is truly exciting and we want to thank both our incredible research partners and our even more amazing lived experience community for all their hard work and commitment to safe, respectful and inclusive collaboration.

We will continue to share progress on all of these exciting initiatives and more....

Understanding boundaries is an essential part of self advocating, and never more so than for young people with brain injuries who are juggling complex needs and support services.
That's why boundaries was our most recent Ability Workshop topic, and we wanted to share their insightful brainstorm about what boundaries mean to them.
Our newest team member Charlee joined the Ability team this month and has been working on creating some great boundary resources for our young adult community, so we thought we'd share. Stay tuned for more info in the coming week with some great boundary scripts and tips.

Another fantastic workshop with our project partners, Professor Mike Seymour and Bey Alivand, from MOTUS Lab at Sydney University. So exciting to see their first look demo's of what a digital human AI assistant could look like based on all the amazing feedback from our first workshop last December.

This could be a truly life changing resource designed by and for young people with brain injuries and their families and a unique opportunity to be at the forefront of new technology to ensure that it is safe, relevant and truly accessible.

We can't wait for the next workshop in June where we get to test drive their prototype. As always, huge thanks to our incredible community of young adults and parents for their insightful and honest feedback, and to our extraordinary project partners, Mike and Bey, who have been so respectful and shown us what equitable collaboration can look like.