The news he received recently that the lungs he was hoping for would go to someone with a better chance of life, thus condemning him, would be a reason to give up for most people.

But he and wife Mallie's decision to travel the country and raise awareness of the issue in the little life he has left so others don't have to go through it is truly commendable.

The goal they are pursuing is one familiar to many campaigners in the organ donation space and that is not only to encourage more donations, but also to change the legislation to help that happen.

Stories such as Matt's bring home the harsh realities of the situation that the total number of people on the waiting list doesn't: each number represents one person and countless family members and friends clinging onto the possibility they'll get another chance.

There are more Australians donating organs than ever before, following the creation of a national reform agenda to lift the rates, but that doesn't mean there's enough.

The ACT has the second lowest rate of registration in the country: at 17 per cent of women and 11 per cent of men.

As of May this year, there were 68,000 Canberra residents on the Australian Organ Donor Register, just under a quarter of the adult population.

In polls, about 69 per cent of Australians indicate a willingness to become organ donors but only 1.8 million had recently registered this wish.

The Taylors are in favour of donor registration changing from "opt-in" to "opt-out" and removing the requirement that families make the final decision on whether or not to donate.

This would ensure a more reliable supply of organs and increase the opportunities for sick people to receive them, but it is a controversial notion that divides advocacy groups.

The conversation needs to continue at a state, territory and national level about what can be done to improve rates.

But, at a personal level, we can all do our part by having the conversation with our families and registering our intentions.