About 200 New Zealanders are expected to take part in the nationwide event Walk to Defeat MND 2025.
The charity initiative, which has already raised more than $100,000, takes place in Auckland, Wellington, Christchurch and Rakaia today.
Organisers said it aimed to honour, remember and stand in solidarity with those affected by motor neurone disease (MND) with funds going towards research, care, and advocacy.
Approximately 400 people in New Zealand were living with MND, an incurable disease that affected motor neurones, which are nerve cells that control the voluntary movement of muscles.
Dr Natalie Gauld, who was diagnosed with MND in 2022, was leading a ground-breaking nationwide survey, backed by the Health Research Council which hoped to identify gaps in MND services and highlight regional disparities in patient experiences.
Gauld would be part of the Auckland event and hoped it could provide another step towards awareness and improving the quality of life for people with the illness.
"We need to be thinking about how we can improve the journey for people with MND," she said.
"My one thing would be how can things improve for people in New Zealand, how can we make things more streamlined so that there's not the level of frustration and anxiety around when I'm going to get a wheelchair for example.
"For people with MND the journey can be very fast, it's a lot of burden on everybody so we need to ensure that people get what they need in a timely way.
Gauld highlighted the publicly funded MND drug Riluzole was currently only available in a tablet form.
"If we could have a liquid Riluzole that would definitely reduce the burden, we need to be thinking about how we can improve the whole journey for people.
"One of the things that disappointed me when I was first diagnosed was the inability to be put on a clinical trial.
"Australia, UK, USA and European countries, there's so many places where clinical trials are happening where patients can get on. We've only had one here and we want more," she said.
It was also important for people to understand that New Zealand had a higher rate of MND compared to international figures, she said.
In New Zealand an average of 144 people were diagnosed with MND every year, or about three in every 100,000 people.
Internationally, the incidence of MND was lower - approximately two in every 100,000 people.
"We don't know why, it's quite hard to work out this sort of thing," Gauld said.
"For example, head trauma is one risk factor but almost everyone who gets head trauma doesn't get MND. Electric shocks are another example.
"It's not like lead poisoning when it becomes quite obvious what has caused it, whether it's from paint, that's something you can check.
"If I look at my history, it's quite hard to work out. I didn't have significant head trauma, I didn't have significant electric shocks, I had a bit of exposure to pesticides and herbicides because I was brought up in a farming area.
"But there's nothing much in my history that could point to what it was for me," she said.
Wayne Richards was diagnosed four years ago and would be taking part in today's event in Christchurch.
"All these people in the MND community, we're all strangers but yet we're all part of this family of this horrible thing we've got.
"The more aware we make the community around us, maybe research will come into it and maybe in the future maybe something will come out of this."
Richards said he agreed that more needed to be done to facilitate the lives of people with MND.
"I know a lot of people with MND and they haven't been alive for very long, I think the average lifespan for a person with MND is three to five years.
"If we need some stuff done, we need it done now, not in six months or one year we need it now to help us."
