He died 18 months ago from motor neurone disease [MND], which she described as "the cruellest disease imaginable".

Mrs Barrett will remember Andrew when she participates in the Walk to d'Feet MND event at Speers Point Park on Sunday at 10am.

"We've been doing the walk for many years to raise awareness and money for MND. And, of course, we now walk for Andrew as well," she said.

Andrew was diagnosed in August 2018. He died at age 55. His mother also died from the disease 25 years ago.

Andrew was a network controller with Australian Rail Track Corporation, who played mixed netball and korfball.

"He was a very brave man who never complained and took everything in his stride. He was an amazing man," Mrs Barrett said.

"To see someone go from a healthy human being to someone that needs a wheelchair, can't walk, eat or talk, it's just horrific.

"It's terrible to see someone wasting away, yet their brain is still OK."

The MND NSW walk will raise money for people living with the disease.

MND NSW CEO Graham Opie said "first and foremost the walk brings people together who understand what each other is going through".

"Only 15 per cent of our funding comes from government. Our nine walks around the state are a very important part of our fundraising.

"The Hunter walk has historically been the biggest walk of all. We've had over 1000 people - that's a huge number for us."

Mr Opie said his organisation supported 60 to 80 people with MND in the Hunter. This support extends to more than 500 people with families and carers included.

MND comprises a group of diseases in which nerve cells (neurones) that control the muscles that enable people to move, speak, breathe and swallow fail to work normally. Muscles then gradually weaken and waste.

"It's becoming more quickly diagnosed now, compared to previous years. There seems to be more people with it these days and no two cases are the same," Mrs Barrett said.

Mrs Barrett is on a mission to fundraise. The third annual MND Team Barrett Ball was held at Merewether Surfhouse last Saturday, raising $16,000.

"The first year we had 93 people, last year 95 and this time 191. It's really grown. I'm excited to see where this will go in the future," she said.

"We know the Mark Hughes Foundation ball started off in a little function room and it's grown bigger and bigger."

National data shows 450 males and 328 females died of MND in Australia in 2021.

MND associations were supporting more than 1500 people living with MND across the country.

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