FSHD Global — Sydney Community Update

Name: FSHD Global — Sydney Community Update
Start: 2025-09-15T15:00:00+1000
End: 2025-09-15T18:00:00+1000
Location: UBS, Level 16

Mon, 15 Sep, 3pm - 6pm AEST

UBS, Level 16

Sydney NSW, Australia

FSHD Global Research Foundation

28 followers · Contact host

Event description

FSHD Global Research Foundation invites you to attend our upcoming FSHD Sydney Community meeting.

Hear about the MOVE Peds study, emerging research, and upcoming clinical trials. Learn how you can become trial and treatment ready with “Cure FSHD”.

Reconnect with old friends and make new ones.

Light catering will be provided. Family members, carers and friends are welcome.

Information on public transportation access
Trains: Martin Place Station is just steps away. Wynyard Station is approximately a 5-minute walk via Hunter Street. St James Station is 6–8-minute walk away.
Light Rail Wynard Stop is just a 2-minute walk.
Multiple bus routes service the Chifley Tower area, including lines 170X, 172X, 206, 293, 343, 374X, 392X, 396X, 412, 423, 428, 428X, and 438X

Details on disability accessibility
Parking is available at Wilson Parking 1 Farrer Car Park and 70 Phillip St Car Park.

Tickets for good, not greed Humanitix dedicates 100% of profits from booking fees to charity

Hostinformation

FSHD Global Research Foundation

28 followers

Contact host

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Facioscapulohumeral Muscular Dystrophy (FSHD) is a highly complex genetic muscle wasting disease causing progressive weakening and loss of muscle in adults and children, robbing the ability to walk, talk, smile, blink or even eat.

FSHD Global Research Foundation was founded in 2007 by Australian philanthropist Bill Moss AO, who lives with FSHD. Since then, the Foundation has raised over $23 million and funded 73 research grants across 11 countries.

As Australia’s peak body for FSHD, we are addressing the global lack of awareness and enabling clinical trials in Australia. We fund research into muscle wellness, technology, and treatments aimed not only at curing FSHD but also benefiting people affected by muscle weakness from neuromuscular disorders, trauma, and ageing.

Guided by transparency, accountability, education, and collaboration, we work globally to improve lives. Our world-first patient-led registry and data hub, Cure FSHD, expands on traditional datasets—incorporating genetics, methylation, full-body MRI scans and Springbok analysis, mental health insights, and quality of life data—to accelerate clinical trial readiness. We are committed to fast-tracking therapies and driving systemic change for people living with FSHD.

This event has passed

Mon, 15 Sep, 3pm - 6pm AEST

UBS, Level 16

Sydney NSW, Australia

Hosted by FSHD Global Research Foundation