Emma is the purpose-driven Managing Director of the FSHD Global Research Foundation. Diagnosed with FSHD in her early 30s, Emma quickly forged strong connections within the FSHD community, becoming a prominent advocate for FSHD, Muscular Dystrophy, and the rights and inclusion of people with disabilities.
In 2021, Emma joined the FSHD Global board as Executive Director, where she has been instrumental in advancing Australian diagnostics and enhancing clinical trial readiness. With a background in senior leadership roles across risk, compliance, and assurance in the public sector, Emma brings a wealth of experience and expertise to her role.
The FSHD Global Research Foundation, established by and for individuals with FSHD, finds its values epitomized in Emma’s leadership. Her personal experience with FSHD gives her a unique and empathetic understanding of the challenges faced by individuals with FSHD, their families, carers, and loved ones.
Emma is unwavering in her commitment to finding effective treatments and an eventual cure for FSHD. She is dedicated to ensuring that all Australians living with FSHD, now and in the future, have access to these advancements. Emma’s drive and dedication to this cause are unparalleled.
