Tireless Muscular Dystrophy advocate and trailblazer named as finalist in 2025 HESTA Excellence Awards
Managing Director of the FSHD Global Research Foundation, Emma Weatherley, has been named a national finalist in the 2025 HESTA Excellence Awards, recognising her unwavering commitment to improving the lives of Australians living with facioscapulohumeral muscular dystrophy (FSHD).
FSHD is a rare, genetic muscle-wasting disease that causes progressive weakness, especially in the face, shoulders and upper arms and is believed to affect more than 3,500 Australians.
Diagnosed with FSHD herself, Emma left a high-ranking, secure government position to pursue a mission close to her heart- finding a cure for FSHD and providing vital support to those affected. Her lived experience, paired with fearless leadership, has transformed FSHD Global into a beacon of hope for thousands of patients and families nationwide.
Under her guidance, the Foundation launched the CURE FSHD registry, a world-first, patient-led app that centralises clinical data and enables individuals to become “trial-ready” for forthcoming FSHD clinical trials. This digital innovation empowers people with FSHD to access personalised care and connect directly with healthcare providers and researchers.
HESTA is an industry superannuation fund. The Excellence Awards celebrate outstanding contributions in disability, aged care, allied health and community services.
“Being recognised in the 2025 HESTA Excellence Awards is deeply meaningful,” Emma said.
“This is more than a personal honour, it’s a moment to shine a national spotlight on FSHD and the community fighting for a better future.”
Emma’s strategic leadership is deeply personal and profoundly practical. From assisting individuals navigating the NDIS to building partnerships with researchers, clinicians, and policymakers, she is both a national voice and a lifeline for the community. Her tireless advocacy extends to organising flagship fundraising events such as Muscles for Muscles and the annual Sydney Chocolate Ball and securing political support through Parliamentary Friends of FSHD.
If awarded the $7,500 prize, the Queensland based advocate plans to launch a national awareness campaign to ensure no Australian living with FSHD is left behind.
“We will encourage more clinical trials to run in Australia and create a more inclusive and empowered FSHD community that’s united, informed and ready to access the treatments of tomorrow.”
The initiative would fund education and outreach efforts, particularly in rural and remote areas, encouraging participation in the CURE FSHD registry and supporting equitable access to clinical trials.
Winners will be announced at a ceremony in Melbourne on Thursday 7 August 2025.