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‘Gastroparesis’, is partial paralysis of the stomach. It is a motility disorder that slows or stops the movement of food from your stomach to your small intestine. Sufferers of this chronic condition often have debilitating symptoms which can include constant pain, nausea and vomiting.
Approximately 125,000 Australians are affected by gastroparesis. Many sufferers have no known cause, and it is often difficult to treat. Treatment options for severe cases can include using a feeding tube and/or a gastric pacemaker. The condition can be life long, with no simple cure.
Gastroparesis Australia was founded by Anneliese Defreitas Alarcon. Anneliese suffered from gastroparesis and tragically passed away in 2018 at the age of 37 from complications arising from her condition. Her legacy continues at Gastroparesis Australia, where a community of “Gastroparesis Warriors” work hard to promote awareness of the condition, support patients and fund research in the hope of one day finding a cure.
One of those warriors is Mrs Simone Downie who leads Gastroparesis Australia. Simone received a diagnosis of gastroparesis in 2005, not long after the birth of her second daughter. The illness has led to her suffering many setbacks and missing milestone events with her family – at one point being so unwell that she was bedridden for almost all of a period of six months.
“I lost the old me – the one
who loved to eat, drink, dance, sing and be at social functions. I developed
this illness when I was 32 years old -a time when I should have been loving
life and experiencing all the new things marriage and motherhood bring.
Unfortunately the phrase “IN SICKNESS and in health” really became tested but I was so lucky that he meant those words forever.” - Simone Downie
In October 2022, the Gastroparesis Australia community teamed up with researchers from Western’s GI Motility Research Unit for their biggest fundraising event ever. Held at the Rowville cricket club in Victoria, the dinner and live auction had a star-studded line up featuring former AFL player and coach, Nathan Buckley, 3AW Bruce Eva as emcee, comedian Des Dowling, and former boxer Barry Michael.
During the event, Simone bravely shared her own personal gastroparesis journey, which resonated strongly with everyone there. Simone’s story was shared on social media by radio host, Bruce Eva, and Rowville MP, Kim Wells, to spread awareness across their respective audiences and constituents.
The event was a great community run initiative, with catering and printing costs donated by family and friends in the gastroparesis community. Donations leading up to and during the event raised over $20,000 – with some donations still trickling in, it is not too late to donate. 100% of donations go towards GI Motility research – finding innovations in gastroparesis diagnostics, treatment, and ultimately supporting the goal to one day find a cure.
Finding a cure is something Dr Vincent Ho and Dr Jerry Zhou, who lead the GI Motility Research Unit and Translational Gastroenterology Laboratory at Western Sydney University’s School of Medicine, are passionate about. Their research program holds the promise of improving symptoms and quality of life for sufferers, so that patients with gastrointestinal disorders can live the lives they deserve.
Focusing on bench-side to bed-side research and using the latest technology in the scientific field, their work is spearheading several trials involving the latest innovations in medical devices and clinical intervention.
Together, the GI Motility Research Unit and Gastroparesis Australia will continue to raise funds to promote awareness of gastrointestinal motility disorders to Australians, through education, translational research and support.
Western Sydney University thanks everyone who has contributed to the success of the community fundraising event, especially Mrs Simone Downie and the Gastroparesis Australia community.
Published February 2023
