On Sunday, 26 April, the Manildra community came together for a heartfelt and uplifting Moving Moments for MSA event at Manildra Bowling Club, raising an incredible $6,195.45 in support of Multiple System Atrophy Australia (MSAA). With more than 120 people in attendance, the day was a powerful demonstration of community spirit, connection, and commitment to improving awareness of the rare disease Multiple System Atrophy (MSA).
This event was one of 2 launches of Moving Moments for MSA held in Manildra and Melbourne. Each March, Moving Moments for MSA will bring communities together to raise awareness of the disease and support families across Australia. We hope to see events held in cities and towns right across the country, growing a strong and connected movement of support.
What is Multiple System Atrophy (MSA)?
Multiple System Atrophy (MSA) is a rare and rapidly progressive neurological condition that affects both the autonomic nervous system and movement. It can interfere with essential functions such as blood pressure regulation, bladder control, coordination, and balance—often placing a significant and growing burden on those living with the condition and their loved ones.
At present, there is no cure, and limited awareness can lead to delays in recognising the condition and accessing the care and support that people need. From the time symptoms first begin, average life expectancy is often around 7–9 years. This can be incredibly difficult to face, making early understanding, compassionate care, and strong support networks so important. Ensuring people feel heard, supported, and not alone can make a meaningful difference throughout their journey.
About Multiple System Atrophy Australia (MSAA)
Multiple System Atrophy Australia (MSAA) is the inaugural charity in Australia dedicated solely to supporting people living with MSA, their families, and carers. Founded in 2020, the charity was built on the legacy of Jim “Jimmy” Williamson (Manildra NSW) & George Nicolaidis (Melbourne Vic) who both passed away from MSA in 2016 at aged 67.
Their daughters, Cherie Miller & Olivia Romano, founded MSAA with a shared determination to improve the lives of families impacted by this devastating rare disease. Their vision was simple but powerful—to ensure that no family faces MSA alone without support, information, and connection.
A key part of this work is the development of a nurse-led support service, designed to provide families with access to clinical guidance, care coordination, and practical support throughout their journey with MSA. This service will make a significant difference to the lives of those affected—providing reassurance, direction, and expert support at a time when it is needed most. “It is a service deeply grounded in lived experience, and one I truly wish had existed when Dad was first diagnosed—when not even medical professionals had heard of the disease.” Cherie (Co-Founder and Director)
MSAA also provides:
- Education and awareness for health professionals and the broader community
- Support and connection for individuals and families affected by MSA
- Advocacy for improved care, earlier diagnosis, and better outcomes
- Development of resources and partnerships to strengthen the national response to this rare disease
To learn more or access support, visit www.msaa.org.au.
Honouring Jim’s Legacy
The Manildra event was held in honour of my dad, Jim Williamson, whose legacy continues to inspire advocacy, compassion, and community action. His story reflects the lived experience of many families impacted by MSA and highlights the importance of raising awareness and supporting those navigating this complex disease.
The day offered something for everyone, creating a warm and welcoming atmosphere where people could come together to remember, connect, and support one another.
It was wonderful to see children bring so much energy and laughter, enjoying good old-fashioned games like the egg and spoon race and learning to master the three-legged race—definitely a highlight for the kids.
Adults enjoyed a friendly game of bowls while others gathered to chat, reconnect, and share stories in a relaxed and supportive environment.
A heartfelt thank you to the Manildra Bowling Club members and Ladies Club for providing such a welcoming space and keeping everyone well fed with delicious, good old-fashioned sausage and coleslaw sandwiches—it truly added to the sense of community on the day.
Special recognition and thanks goes to Greg Trevena, who generously pledged to shave his beard and hair if he raised $500. In true community spirit, Greg went above and beyond, raising an incredible $900 and proudly following through on his promise in honour of his mate Jimmy. A huge thank you also to Michelle for her fantastic barbering skills—you were an absolute legend, and helped make the moment such a fun and memorable one.
I am deeply grateful for the courage of my Mum, Dot Williamson, who generously hosted this event while still navigating the grief of losing her lifelong partner. Her strength and commitment made this day possible. Thank you Mum. I would also like to sincerely thank Glenda Gibson and her family for attending and supporting the event—your strength and presence are truly inspiring.
What makes this event even more special is that the outcome went far beyond anything we imagined. The initial goal was simply to raise awareness of a rare disease that has impacted our small community twice, with the hope that 40–50 people might attend. With the encouragement of the Manildra Bowling Club, the event evolved into a fundraiser for MSAA—and the amount raised was truly incredible. The generosity and support shown on the day exceeded all expectations and is a reflection of the strength and heart of this community.
To everyone who attended, helped organise, donated, bought tickets or supported the day—thank you from the bottom of my heart. Your kindness, generosity, and willingness to come together for this cause will make a lasting difference to families impacted by Multiple System Atrophy.
Every dollar raised will go directly to the work of MSAA—supporting families, raising awareness, and advocating for better care and outcomes.
The success of the Moving Moments for MSA Manildra event reflects the strength of our rural community and the power of people coming together with purpose. Through events like this, awareness grows, connections deepen, and hope is created for those living with MSA. My hope is that Moving Moments for MSA Manildra will continue for years to come.
