Emma Weatherley

Emma is the Foundation’s purpose driven Managing Director. After her diagnosis of FSHD in her early 30’s, Emma quickly formed connections to FSHD Global and within the FSHD community. She became a strong advocate for FSHD, Muscular Dystrophy and access and inclusion for people with disabilities. Emma joined the FSHD Global board in 2021 as Executive Director and has been working to revolutionise Australian diagnostics and build clinical trial readiness. Emma’s background in risk, compliance and assurance, combined with her lived experience of FSHD and strong connections with the FSHD community made her the perfect fit for the role of Managing Director. This Foundation was created for and by people with FSHD, and Emma’s appointment as Managing Director cements this value within our organisation. Emma understands first-hand the difficulty that people with FSHD and their family, carers and loved ones face. She is committed to doing all she can to help the Foundation find effective treatments and an eventual cure, and to make sure that all current and future Australians living with FSHD can access them. Emma’s drive and commitment to this cause is unmatched.