Emma Weatherley

Executive Director

After her diagnosis of FSHD in her early 30’s, Emma’s desire to understand her condition led her to connect with the FSHD Global Research Foundation. She quickly formed connections within the FSHD community and has taken up many opportunities to speak at events and advocate for FSHD, Muscular Dystrophy and access and inclusion for people with disabilities. Her passion for supporting the Foundation and her community, along with her skills in finance, risk management and governance after over 20 years working as a CPA in audit and financial risk management roles, made her a natural fit for the role of Executive Director of the Foundation. Emma is excited to work with the Board, as well as within the organisation, to advance progression towards a treatment and a cure for FSHD. Emma shared her story at the 2015 chocolate ball and was joined by her daughter, Hannah, at the 2019 chocolate ball shortly after her clinical diagnosis. As Emma is not only an FSHD patient herself, but is also a mother trying to navigate the diagnosis and treatment processes for her daughter, she 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.