On 2 and 3 April – the very start of Parkinson’s Awareness Month – Parkinson’s NSW Support Group Leaders travelled to the Sydney Masonic Centre for the first Leaders Conference since 2019, followed by a Community Research Symposium.  

There were almost 70 leaders and committee members in attendance, most of them having travelled from regional and rural areas. 

Speakers at the Leaders Conference included: 

• Diana Piper from the Centre for Volunteering, on the rewards and challenges of being a volunteer. 

• Leadership and management professional Greg Zimbulis who spoke on ‘simple, easy to apply leadership actions to make things happen.’ 

• John Back, Communications Manager and Stacey Foster, Support Group Coordinator of Parkinson’s NSW who presented their Support Group Education Framework which focuses on the day-to-day operations of Support Groups. 
• Mary Kay Walker, CEO of Parkinson’s NSW, who gave a timely update on the organisation’s most recent advocacy and community engagement efforts.   

There were many opportunities for Support Group Leaders to discuss topics with each other at their tables and then come together as one group at the end. They shared their own experience with leadership so far, wrote a vision statement for their Support Groups, and learned about building a leadership team, succession planning, managing leadership burnout, and Support Group administration – including communications, financial management, annual plans, event management, and risk management.  

It wasn’t all work. The formal sessions were broken up with sing-alongs led by Kempsey Support Group Leader, Garth Fatnowna on guitar. There were also some physical and mental exercises led by Inner West Support Group Leader and researcher, Paulo Silva Pelicioni.  

The following day was a Community Research Symposium attended by 250 people including Support Group Leaders. 

The event was opened by Craig James who lives with Parkinson’s and last year retired from the position of Chief Economist at CommSec. 

Highly qualified speakers then presented on the latest breakthroughs in Parkinson’s research including: 

• Professor Carolyn Sue, who is Kinghorn Chair of Neurodegeneration at Neuroscience Research Australia (NeuRA), Professor of Neurology at the University of New South Wales (UNSW) and Director of Neurosciences at Prince of Wales Hospital (POWH).  

• Clinical Nurse Consultant Rachael Mackinnon, who spoke on her experience as a nurse working in the research environment at NeuRA. 

• Neurological physiotherapist Dr Melissa McConaghy, who presented on the impact of exercise on Parkinson’s progression.  

• Speech pathologist Colleen Kerr, who discussed emerging therapies for swallowing, conversation, and facial expression. 

• Associate Professor Richard Gordon, who spoke on exploring the role of medication repurposing in identifying new treatments in Parkinson’s.  
• Dr James Peters, who explored the role of MRI Guided Focused Ultrasound in treating the symptoms of Parkinson’s Disease.  

Feedback from attendees at the Support Group Leaders Conference and Research Symposium revealed that the two days were “worthwhile,” “uplifting,” “wonderful,” “interesting and informative” and a lot was gained from participating.