On September 15th, the Sydney FSHD community gathered for an unforgettable evening of connection and discovery. Generously hosted by UBS, the event brought together passionate community members, researchers, and service providers—all united in our shared mission to advance FSHD research and support.
The evening featured an impressive lineup of speakers who shared the latest developments in research and care. Dr Katrina Morris and Prof Suzanne Hodgkinson provided valuable updates on current research initiatives and clinical trials, while David Lane from Springbok Analytics offered insights into cutting-edge muscle imaging technology. Sam Kim from NeuFit ANZ and Daniel Camilleri from Apex Health Movement introduced innovative therapeutic approaches, and Jessica Henry outlined the comprehensive support services available through Muscular Dystrophy NSW.
Bill Moss AO, Natalie Cooney, and Emma Weatherley from FSHD Global Research Foundation shared exciting progress updates on our international research efforts and initiatives driving us closer to effective treatments.
But beyond the valuable information shared, it was the atmosphere that made the evening truly special. Longtime friends reconnected over refreshments, new faces were warmly welcomed into our community, and the room buzzed with hopeful energy as attendees engaged directly with researchers and one another. These moments of connection remind us why we do this work, and why our community is so powerful.
Thank you to UBS for their generous hospitality, to all our speakers for sharing their expertise, and to every community member who joined us. Your presence and enthusiasm make these gatherings meaningful and drive our collective progress forward.
You can view highlights from the evening in our photo gallery.