Our Steering Committee

Professor Greg Sutherland, PhD – Professor of Molecular Neuropathology at The University of Sydney and Director of the NSW Tissue Resource Centre, an NIH-funded brain bank focused on alcohol addiction and neuropsychiatric disorders.

Jill Weimer, PhD – Neuroscientist at Sanford Health, advancing research into neurodegenerative and paediatric rare diseases, with a focus on translating discoveries into potential therapies.

Verónica Martinez-Cerdeno, PhD – Neuroscientist at the University of California, Davis, leading research into brain development and neurodevelopmental disorders, with a focus on autism and rare genetic conditions.

Maurice Curtis, PhD – Professor of Neuroscience at the University of Auckland and Co-director of the Neurological Foundation Human Brain Bank. His research focuses on the earliest brain changes that signal Parkinson’s disease.

Markus Hofer, MD PD – Associate Professor of Neuropathology and Neuroimmunology at The University of Sydney, with expertise in brain pathology and inflammatory disorders of the central nervous system.

C. Dirk Keene, MD, PhD – Professor of Neuropathology at the University of Washington, Director of the UW BioRepository and Neuropathology Division, and a leader in Alzheimer’s and brain donation research, with over 300 publications.

Kris Elvidge, PhD – Head of Research at the Childhood Dementia Initiative, driving systemic change for children with dementia. She has worked with rare disease organizations since 2008 and previously led research at the Sanfilippo Children’s Foundation.

Anne Rugari – CEO of Partners for Krabbe Research, founder of the Pediatric Brain Bank at the University of Pittsburgh, and a consultant for rare disease tissue donation. A dedicated rare disease advocate and parent of two children with Krabbe disease.

Meagan Cross – CEO of FAST Australia and founding member, leading strategic initiatives and the Global Angelman Syndrome Registry. She also serves on the board of FAST US and is a parent advocate for her daughter with Angelman syndrome.

Jonathan Santoro, MD – Director of Neuroimmunology at Children's Hospital Los Angeles, specializing in neurologic disorders in Down syndrome. His research focuses on neuroinflammation in cerebrovascular and neurocognitive diseases, alongside disability advocacy.

Mick Badran – Founder of SolveIT.Today, where he has led breakthroughs in system integration for healthcare. He is shaping the future of healthcare technology while navigating the challenges of rapid digital transformation.