‘Frugal Foodie’ turns grief into MND hope

Stephanie de Sousa, a former MasterChef contestant and cookbook author, is channeling her grief into a powerful advocacy role for motor neurone disease (MND) awareness. Her sister, Therese, died in 2022 after a battle with the terminal neurodegenerative condition, leaving de Sousa with cherished memories of their time together.

“

I honestly only really remember the good times now. I have blocked the awful parts out of my mind.

"I honestly only really remember the good times now," de Sousa told AAP. "I have blocked the awful parts out of my mind." She emphasizes that MND is an all-consuming disease, not just for the patient but for their entire family, requiring support from friends, medical professionals, and organizations like MND Australia.

For de Sousa, food became a profound way to express care for her sister. As Australia's "Frugal Foodie," she found that cooking for Therese, even when she claimed not to be hungry, was an "intimate act of love and nurturing." These culinary moments became a significant part of their connection as Therese's condition progressed.

“

What I would like everyone to understand about MND is how all consuming MND is for the entire family. You cannot tackle this disease without the help of friends, family, medical professionals and MND Australia.

Now, de Sousa is stepping into the role of MND Australia's inaugural Hope Ambassador. She is launching the organization's new "Sprinkle Hope for a cure. Sprinkle Kindness for today" campaign ahead of Global MND Awareness Day on June 21. The campaign uses the blue cornflower, the international symbol of hope for MND, as its inspiration.

“

She always said she never felt hungry but when I put something yummy in front of her she would always eat it. It was a very intimate act of love and nurturing that she allowed me to do.

MND Australia CEO Clare Sullivan highlighted the campaign's timeliness, noting the recent heightened public attention on the disease due to figures like Jai Arrow's diagnosis and Neale Daniher's passing. "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," Sullivan stated. She added that Australia is engaged in an "important national conversation" about MND, stressing the dual importance of pursuing a cure and fostering a more compassionate community for those living with the disease now.

“

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. 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.