Emma Weatherley is CEO and Managing Director of the FSHD Global Research Foundation, Australia’s peak body for FSHD. An internationally recognised leader with lived experience of FSHD, she is focused on building the international infrastructure required to accelerate the development, approval and delivery of therapies for the FSHD community.
Emma leads initiatives across the full therapeutic pathway, aligning patient advocacy, research investment, clinical trial readiness and health policy to ensure emerging treatments can reach patients as quickly as possible.
She chairs Project Mercury, a patient led global collaboration bringing together advocacy organisations, researchers, clinicians and biopharma partners to strengthen trial readiness and support the evidence needed for global patient access to future FSHD therapies.
Emma serves on the Board of Facio BioTherapies, a biotech focussed on FSHD established by FSHD Global to translate promising discoveries into clinical development. She is also a member of the Scientific Advisory Committee of Muscular Dystrophy Australia.