Motor neurone disease remains a death sentence but researchers are making progress on deciphering the cause and developing better therapies.
The terminal condition has been thrust back to the forefront of Australia's collective consciousness in recent weeks by high-profile cases.
The NRL community was rocked when South Sydney and Queensland forward Jai Arrow announced his sudden retirement aged 30 following his MND diagnosis.
Days later, former AFL great and FightMND co-founder Neale Daniher died after a 13-year battle with the disease he called "the Beast".
MND encompasses a group of diseases that weaken and kill nerve cells, with patients gradually losing the ability to walk, talk, swallow and breathe.
"If you've got a diagnosis for MND, every week you lose the ability to do something you used to do - feed yourself, get off the couch, get in and out of the shower," MND Australia chief executive Clare Sullivan told AAP.
