We are proud to announce that our CEO and Managing Director, Emma Weatherley, has been recognised with the 2025 HESTA Excellence Awards in the Individual Leadership Category. This remarkable achievement reflects not only Emma’s exceptional dedication but also the collective strength of our entire community.
Emma’s approach to leadership is deeply informed by her personal journey with FSHD. This lived experience, combined with her fearless advocacy, has fundamentally transformed how our organisation approaches research acceleration, innovation, and community support. Under her guidance, we have developed new pathways to bring hope to thousands of people worldwide who are living with this rare muscle-wasting disease.
Her leadership has been particularly evident in groundbreaking initiatives such as the launch of the world’s first patient-led ‘Cure FSHD‘ app. This innovative platform centralises medical data, empowers individuals to take control of their FSHD journey, and streamlines participation in clinical trials, bringing patients closer to potential treatments and, ultimately, a cure.
The prize money accompanying this award will be strategically invested to further our core objectives: accelerating research initiatives, enhancing clinical trial readiness within our community, and providing vital resources to the global FSHD network. These funds represent more than recognition. They are a catalyst for continued progress in the fight against FSHD.
Emma’s work extends far beyond our organisation’s immediate reach. She consistently builds strong partnerships with researchers, policymakers, and medical professionals, creating a collaborative ecosystem focused on finding solutions. Her comprehensive approach includes offering practical support to FSHD patients, from answering complex questions about NDIS applications to addressing the mental health challenges that often accompany chronic illness.
We also celebrate our fellow finalists in the HESTA Excellence Awards, whose incredible work continues to inspire positive change across the disability sector. Their dedication reminds us that transformation happens through collective effort and shared vision. Special recognition goes to Jan Pye for nominating Emma for this prestigious award, and to HESTA Super for acknowledging the vital work being undertaken across the disability sector. Such recognition helps elevate awareness of rare diseases and the urgent need for continued research and support.
This award represents more than individual achievement. It symbolises hope for everyone in the FSHD community. Emma’s powerful advocacy continues to inspire others to join the fight against FSHD, bringing us closer to our ultimate goal: finding treatments that provide relief and, eventually, halting disease progression entirely. As we celebrate this milestone, we remain focussed on our mission to create a future where FSHD no longer limits lives, dreams, or possibilities. With Emma’s continued leadership and our community’s unwavering support, we are confident that this future is within reach.
This incredible recognition belongs to everyone in our community – our dedicated staff, volunteers, supporters, and most importantly, the FSHD community members who inspire us every day. Emma’s fearless leadership and lived experience with FSHD have transformed how we advocate, innovate, and bring hope to thousands living with this rare disease.