Many conditions. One community.

Danielle is a co-founder of Genetic Epilepsy Team Australia (GETA), President and Director of the SYNGAP Research Fund Australia, a registered charity with Deductible Gift Recipient (DGR) status, a member of the Cure SYNGAP1 Collective and Chair of the SYNGAP Global Network. Through these roles, she works across families, clinicians, researchers, patient organisations and industry to improve outcomes for people living with genetic epilepsies and developmental and epileptic encephalopathies.

Danielle’s commitment to this work is deeply personal. As a mother and carer, she has experienced first-hand the challenges families face when navigating complex health, disability and support systems for their children. She brings to GETA a combination of corporate experience, governance capability, international advocacy leadership and a parent’s lived perspective, grounded in a determination to create meaningful and lasting system change.

Since moving to Australia in 2008, Sara has served as a featured commentator on Australia’s ABC News Breakfast and other ABC News programs providing detailed analysis of the US political landscape.

Sara is the Chair of the Australian-American Fulbright Commission, the Vice President of KCNQ2 Cure Alliance, and a co-founder of Genetic Epilepsy Team Australia.

Sara is an accomplished public speaker, emcee and moderator who has addressed audiences in the United States and Australia.

Sara James is the author of An American in Oz (Allen & Unwin), co-author of The Best of Friends (HarperCollins) and editor of An Extraordinary School (ACER Press).

Daniel is a Graduate of the Australian Institute of Company Directors and holds a Master of Health Management and Bachelor of Nursing from QUT. He is a Non-Executive Director and Finance and Audit Committee member of Autism Queensland and was a Foundation Director of the Aged and Community Care Providers Association (now Ageing Australia).

Daniel is a member of GETA’s organising committee and has a deeply personal connection to its purpose: his daughter, Taliyah, lives with a KCNA2-related developmental and epileptic encephalopathy. He brings both governance expertise and a parent and primary carer’s lived perspective to GETA.

Leah is a founding member of the DEE Research Consumer Committee, established in 2021 as part of a NHMRC Centre for Research Excellence. She has collaborated with patient organisations, researchers, and industry to advance DEE research, raise awareness, and provide support for patients with DEEs. Leah has strong connections with DEE patients and carers in the community and has a focus on ensuring their lived experience is recognised and incorporated within relevant research and practice.

As the mother and primary carer of a six-year-old daughter with Dravet syndrome, Leah brings invaluable lived experience to her advocacy. Her personal and professional perspectives strengthen her commitment to improving support, research, and outcomes for families living with DEEs.

Originally from the United Kingdom, Danny established South Yarra Osteopathy after moving to Australia in 2010. He previously held senior teaching and leadership roles at the University College of Osteopathy, represented the British Osteopathic Association, and was one of two Consultant Osteopaths at London’s Portland Hospital specialising in the care of women and children. He holds a Master’s in Osteopathy and has lectured internationally.

Danny is also a Director of SYNGAP Research Fund Australia and served for five years as President of Glenallen School Council. He brings clinical expertise, governance experience and compassionate, values-based leadership to GETA’s work to improve diagnosis, coordinated care, research readiness and equitable access to emerging therapies.

Emily completed a Master of Laws specialising in International Disability Law and Policy, graduating with First Class Honours. Her professional experience includes roles with the Disability Royal Commission, the Australian Human Rights Commission and the United Nations Special Rapporteur on the Rights of Persons with Disabilities.

As both a sibling and a parent of a child with a rare condition and disability, Emily brings lived experience to her work. She advocates for practical reform shaped by the rights, knowledge and experiences of people with disability and their families.

Previously, he was News Corporation’s spokesman and personal spokesman for Rupert Murdoch for nearly a decade. He worked on many of the company’s most significant multi-billion dollar transactions and was a trusted advisor across the company globally.

Andrew also worked as Executive Director of Communication and Media Relations at Telstra Corporation, where he advised the company’s Board and CEO and oversaw all media relations and issues management.

Andrew started his career as a journalist with News Corporation papers in Australia and was a correspondent in Japan, New York and Canberra. Andrew is actively involved in not-for-profit organisations, particularly in epilepsy research and advocacy, and is a Life Member of Museums Victoria.