On Friday, 24th June, about 30 people from all areas of Niemann-Pick disease joined us for our conference held online and in-person at The Florey Institute of Neuroscience and Mental Health to gain key insights and updates. This conference also served to connect both new and previously diagnosed people with peers, clinicians and researchers.
Kicking off at The Mint for a relaxed BBQ dinner and drinks, all of our attending families were able to get acquainted. While our youngest debated the pros and cons of Lego Spiderman, the parents were able to meet and greet new and old faces. Some of us had not seen each other since the first NPC Conference held in 2019!
As the youngest settled in with our childcare volunteers - families, researchers and clinicians gathered bright and early at The Florey for our one-day conference. After a quick yet excited announcement of our new merchandise, attendees moved on to the real business at hand. We received updates and information from organisations spanning clinical trials, the latest research and community support at varying levels.
Thanks to the positive feedback from our first hybrid conference in 2021, we were pleased to deliver another accessible event together. 43 households joined us online from both Australia and overseas throughout the day. Starting at 8.30am and closing at 5.30pm, our attendees left satisfied, yet ready for a good rest.
Re-joining us the following day for a recap and lunch, the families once again gathered together before a final farewell. It was a fantastic opportunity to swap stories, advice and tears with other lived-experience experts of Niemann-Pick disease.
As the final taxi left for the airport, we said goodbye and wondered... Who will return next year, and how many new faces will we meet.
The ANPDF is grateful to their key partners and sponsors that enabled the attendance of our patients from all over Australia both in-person and virtually.
Event Partner - Cyclo Therapeutics
Venue Partner - The Florey Institute of Neuroscience and Mental Health
Major Sponsor - National Disability Conference Initiative Grant funded by the Australian Government Department of Social Services
Contributors - Soroptimist International of Melbourne, Machine Screen Printers
Streaming Partner - Live Streaming services
Thank you to the organising committee; Deanna Carpino, Andrew Carpino, Ya Hui Hung, Pip Johnston, Joy Lee, Mark Walterfang, and Mandy Whitechurch - for their tireless hours that were volunteered for the success of this event. Special mention to first-time ANPDF volunteer, Tailah Griffin, for her help on the day as both photographer and attendee coordinator and returning host, Felicity Munro. Thank you to all the new and returning speakers who kindly gave their time to delivering their experience and expertise to our Australian audience. Thank you to all involved.
Our lucky attendees received one of our new Pom-Pom Beanies to take home and survive the Aussie winter season. You can also support our NPC Warriors by getting yours today: