Parkinson’s Awareness Month
If you or your support group are involved in an activity or event for Awareness Month, please share it with me so I can put it in the next InTouch. Photos and a short summary of what you did, people you spoke to, interesting stories etc would be great to share!
Support Group Leaders Conference & Community Symposium
Across two days in early April, Support Group Leaders travelled to the Sydney Masonic Centre for the first Leaders Conference since 2019 and our Community Symposium. It was a fantastic way to kick off Parkinson’s Awareness Month!
There were almost 70 leaders and committee members in attendance, most of them having travelled from regional and rural areas.
It was important for us that the group were collectively recognised and appreciated as volunteers, so the first speaker of the day was Diana Piper from the Centre for Volunteering.
Diana facilitated a great discussion around why people volunteer and what the benefits of volunteering are, whilst acknowledging the challenges. It was wonderful to see the group sharing with one another and realising they have a lot in common with their motivations for volunteering and supporting each other in their shared challenges.
The other aim of the Conference was to build the leadership skills of our Support Group leaders so they can feel confident in running their groups. We invited leadership and management professional, Greg Zimbulis, to speak on ‘simple, easy to apply leadership actions to make things happen.’
Greg took our leaders through how to be a more influential and effective leader of their support group; increase participant numbers; increase community awareness and engagement and many other points. He also asked them to answer one important question: “what outcomes would you most like to see change or improve in your group?” 
Greg spoke to our leaders about the why, the what, and the how of leadership.
All the leaders in attendance received copies of Diana and Greg’s presentations, so if you’d like to hear more, please ask your Support Group leader to share what they’ve learned and their key takeaways.
John Back, Communications Manager at Parkinson’s NSW, and myself also rolled out our Support Group Education Framework which built upon the previous sessions earlier in the day. This Education Framework is all about the day-to-day operations of Support Groups, the nitty gritty.
There was lots of opportunity for leaders to discuss with each other at their tables and then come together as one group at the end. They discussed their own experience with leadership so far, wrote a vision statement for their Support Group, 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. So much information was shared, it was fantastic!
Again, please feel free to ask your Support Group leader for more information.
It wasn’t all work! We broke the day up with some fantastic singing (‘Let’s Get Loud’), led by Kempsey Support Group Leader, Garth Fatnowna on guitar in the morning and afternoon. There were also some physical and mental exercises (‘Get Up and Move’) led by Inner West Support Group Leader and researcher, Paulo Silva Pelicioni. Thank you to you both for bringing the joy and laughter to the day!
Our CEO, Mary Kay Walker, finished the day with an update on Parkinson’s NSW advocacy efforts and our funding submission to the NSW State Government. Mary Kay emphasised that despite our name having ‘NSW’ in it, we are not a government organisation, nor is Parkinson’s NSW sustainably funded by government.
To back up our work on the funding submission to the state government, Mary Kay has met with more than 30 key officials and gathered over a dozen letters of supports from Members of Parliament to the Minister for Health, over the past few months, urging favourable consideration of our funding submission.
In the evening, we invited our leaders to join us for dinner – a way to say thank you for all the work you do, as well as to unwind after a long day.
The following day was our Community Symposium, where close to 250 people attended (including Support Group Leaders) to hear from Professor Carolyn Sue, Clinical Nurse Consultant Rachael Mackinnon, neurological physiotherapist Dr Melissa McConaghy, speech pathologist Colleen Kerr; Associate Professor Richard Gordon and Dr James Peters. Topics included MRI Guided Focused Ultrasound, exploring medication repurposing in identifying new treatments in Parkinson’s, emerging therapies for swallowing, conversation, and facial expression; the impact of exercise on Parkinson’s progression, breakthroughs in biomarkers, and being a nurse in Parkinson’s research.
