'Frugal Foodie' turns grief into MND hope

They were all times spent with her sister, as motor neurone disease slowly stripped away her independence.

Therese died in 2022 after living with the terminal neurodegenerative condition, leaving de Sousa, the former MasterChef contestant-turned-cookbook author and social media sensation, with memories that have settled into "the good times".

"I honestly only really remember the good times now," de Sousa told AAP.

"I have blocked the awful parts out of my mind."

But those awful parts defined the reality of MND: progressive loss of movement, intense care needs and the gradual erosion of independence that affects not only patients but entire families.

"What I would like everyone to understand about MND is how all consuming MND is for the entire family," de Sousa said.

"You cannot tackle this disease without the help of friends, family, medical professionals and MND Australia."

For de Sousa, food became one of the most intimate expressions of care. Known as Australia's "Frugal Foodie", she said cooking for her sister took on a deeper meaning as Therese's condition progressed.

"She always said she never felt hungry but when I put something yummy in front of her she would always eat it," she said.

"It was a very intimate act of love and nurturing that she allowed me to do."

De Sousa is now MND Australia's inaugural Hope Ambassador, helping launch the organisation's new "Sprinkle Hope for a cure. Sprinkle Kindness for today" campaign ahead of Global MND Awareness Day on June 21.

The campaign, which begins on Monday, is inspired by the resilient blue cornflower - the international symbol of hope for motor neurone disease.

MND Australia chief executive Clare Sullivan said the campaign comes at a time of heightened public attention on the disease.

"The past few weeks have been a difficult time for the MND community, with Jai Arrow's diagnosis and the loss of Neale Daniher AO shining a spotlight on a disease that affects thousands of Australians and their families," she said.

"Through Sprinkle Hope, we're asking Australians to do two things: help create hope for the future through donations that support research, advocacy and care, and sprinkle kindness into the lives of people affected by MND today."

She said Australia was having an "important national conversation" about the realities of the disease.

"We often talk about finding a cure for MND and that's critically important.

"But while we work towards that goal, every Australian can help by creating a more understanding and compassionate community for people living with the disease today."

Some 2752 Australians are currently living with MND, which progressively affects the nervous system, leading to loss of mobility, speech and the ability to breathe independently.

The campaign will raise funds for MND Australia's advocacy, education, care and research programs, with supporters who donate $50 or more receiving edible blue cornflower petals and a recipe card created by de Sousa.

For de Sousa, the message is simple.

"Sometimes it's checking in on someone, cooking a meal, offering practical help," she said.

"I hope this campaign inspires people to do those small things that can make a big difference."