In a world-first observational trial, the married couple are studying tasty, high-calorie foods like ice cream, French fries, chocolate and cheese, and their effect on appetite and slowing down weight loss in people with MND.
“Food is central to life’s enjoyment, but many patients with MND lose their appetite, which ultimately lowers their quality of life. Weight loss impacts disease progression and increases the risk of earlier death,” Dr Steyn says.
“We’re trying to understand how to help patients maintain their appetite, and the first step is to study how the brain reacts to food in patients with MND.”
Both biomedical researchers, Dr Steyn and Dr Ngo met in a lab on Dr Steyn’s first day at UQ in 2008.
“I had my eye on him instantly, so I asked if he wanted to help me cook sausages for the School of Biomedical Science’s social club. He told me he might help… but that he didn’t eat meat… I was hopeful this wouldn’t last long!” Dr Ngo laughs.
Dr Steyn had just moved to Australia from New Zealand to care for his mother, who had fronto-temporal dementia. It was a difficult time.
“Shu (Dr Ngo) sat with me by my mother’s side the night she died. She has been my rock ever since,” Dr Steyn says.
Meeting Dr Ngo opened up a whole new world for Dr Steyn. Dr Ngo’s family owned Fortitude Valley’s yum cha restaurant King of Kings and her life revolved around food.
“Food is a massive part of Chinese culture,” Dr Ngo says.
With five brothers and two sisters, Dr Ngo helped run the family restaurant while growing up. School nights were busy, filled with laughter, homework, and of course, a seemingly unlimited supply of delicious food.
“Everyone loves yum cha because dumplings are little packages of happiness,” Dr Ngo says.
“My mum died of cancer in 2008, and after that we sold the restaurant because her wish was to give her children better opportunities than my parents had.”
As a biomedical scientist, food has remained a big part of Dr Ngo’s life.
“During our South African honeymoon, we bought boerewors (South African sausage) and snuck off from our tour group to barbecue it on the side of the road with a random American couple!” Dr Ngo laughs.
“When I crave a certain food, I have to have it. It’s like an obsession!”
The two researchers thoroughly enjoy what they do; being in the lab, right through to working with MND patients and forming relationships with the people they’re trying to help.
For the past 10 years, the couple have pushed themselves out of their comfort zones in countless MND research fundraising challenges, including a 1,000 km virtual bike ride during the COVID-19 lockdown in May.
“I’m not very good on a bike, but we helped raise $15,000! I also don’t know how to swim well, but I’ve done that too to raise funds for MND!” Dr Ngo laughs.
They’ve worked with celebrity chef Ben Milbourne, as he created a dessert recipe inspired by his grandfather, whom had MND. The recipe was presented on his television show, Food Lab.
“In time, we will help design a cookbook specifically tailored for people with MND. We want to showcase recipes that are soft and easy to eat, but also tasty and high in calories. We also aim to hold many events to raise awareness of MND. A food-truck event would be great, as it could also raise awareness of the importance of maintaining your appetite when living with MND,” Dr Steyn said.
The couple hope their research will lead to a clinical trial that will help people with MND maintain a healthy appetite.
To support MND research, email firstname.lastname@example.org.