Our Team
Our team is made up of passionate people committed to driving research towards a world free of Sanfilippo Syndrome.
Victoria Bowring, Chief Executive Officer
With 25 years experience in leadership within commercial businesses and for-purpose organisations, Victoria brings her skills for combining innovative approaches with strategic thinking to all aspects of organisational management in order to make a difference by doing things differently. Her experience in health research, funding and advocacy are the result of being driven to bring to light hidden experiences and the people connected to them.
As a mum of two gorgeous girls, when not at work Victoria spends her time cooking, creating and enjoying nature with her family and loveable Cavoodle.
Dr. Lisa Melton, Research Manager
Dr. Melton has more than 20 years’ experience in research management and research communication. She has a PhD in Neuroscience from Newcastle University in the UK
Dr. Melton was Head of Research at MS Research Australia for eight years before pursuing an opportunity in the higher education sector as the Institute Manager for the UNSW Ageing Futures Institute.She has supported national and international research collaborations and has worked with stakeholders from diverse sectors, including industry, government, NGOs and community.
Erene Keriakos, Bookkeeper
Erene, aka ‘EK’ or ‘Smiley’, is our Foundation’s bookkeeper. She is an accountant by trade with over 15 years experience in company accounting for small to medium business. Erene worked alongside our Foundation’s founder, Megan Donnell, ‘pre-Sanfilippo’ and was involved with the Foundation as a supporter and volunteer before joining the team. She works at the Foundation 2 days per week and also does bookkeeping for the Fragile X Association of Australia.
When Erene is not crunching numbers, she spends time with her husband and three children. A quiet achiever and long-time supporter, EK is a much-valued member of our team.
Emma Kirkman, Fundraising Manager
Emma's background is in IT administration, marketing, events and travel management – the perfect skillset for life in a fast-paced not-for-profit. Emma’s can-do attitude, incredible work ethic and community spirit makes her a much-valued member of our team.
Prior to joining the Foundation, Emma was involved in the grassroots drought relief campaign ‘A Fiver for a Farmer’ which went viral and raised more than $1million in less than five weeks. Emma is the mother of four young children and lives on the Northern Beaches.
Danielle Cini, Research Program Coordinator
Dani administers all aspects of our grant program and assists with all science communications. She has completed a Biomedical Science/Science double degree at Monash University, with Honours in Biochemistry, where she achieved first class honours!
After this she worked as a Research Assistant at the Biomedicine Discovery Institute and has volunteered for the Salvation Army and St Vincent de Paul Society.
When Dani isn’t learning all she possibly can about Sanfilippo, she dabbles in digital painting, coding and writing.
Jillian O'Grady, Family Ambassador
Jillian is mum to three gorgeous, bubbly and fun children. Rory 9, Anna 6 and Juliet 18mths old.
Sadly, in 2019, both Rory and Anna were diagnosed with Sanfilippo Type A (attenuated), marking the beginning of a very different life journey than the one she and her husband had imagined.
Since then, Jillian has navigated the uncertainty of this condition and its potential treatment opportunities. Her lived experience, knowledge and understanding of the research, and passion to find a cure not only for Anna and Rory but for all children with Sanfilippo, makes her an inspiring Family Ambassador.
The purpose of this voluntary role is to be the representative of the collective family voice when needed and to be a reassuring point of contact for families wanting to connect with others who "just get it".
Our Board of Directors
Our Board of Directors bring a wealth of energy, enthusiasm and expertise to our cause.
Our Board provide all expertise pro-bono and receive no remuneration.
Megan Donnell, Founder
Megan founded the Sanfilippo Children’s Foundation in 2013. She held the position of Executive Director for 7 years looking after all the day to day running of the foundation before moving to stategic leadership role on the Board. This move allowed her to create a new organisation, Childhood Dementia Initiative, focused on driving innovative and collaborative research into the disorders that present with childhood dementia.
Megan lives on the Northern beaches of Sydney and is the mother of two children, Isla and Jude, who both have Sanfilippo Syndrome.
Prior to making the Sanfilippo movement her life’s work, Megan’s occupation was a management consultant, specialising in large-scale IT project management and organisational change management.
Contact Megan via email: megan.donnell@sanfilippo.org.au
Angeline Veeneman
Angeline's professional background is in management consulting. She runs her own consulting company, providing specialist project management and Information Technology services to non-profit and commercial organisations. She is a French national married to a Dutch man with twin girls born in Switzerland (and logically calls Australia home).
Contact Angeline via email: angeline.veeneman@sanfilippo.org.au
Mark Arnold
Mark is responsible for strategy and governance of the Sanfilippo Children’s Foundation. He has been a Board member since its inception.
His key activities include defining organisational strategy; developing a strategic plan; and establishing processes to facilitate compliance with governance and regulatory requirements. Mark is a seasoned entrepreneur who has owned and managed a successful consulting practice and several start-ups including an insurance company.
He is also the father of three beautiful girls, finding himself somewhat outnumbered.
Dr Alison Butt
Dr Alison Butt is the Director, Research Strategy Office at University of NSW. Alison has had over twenty years’ experience in cancer research as both an active researcher and more recently, in a strategic leadership role as the Senior Scientific Officer at Cancer Australia.
Her previous roles have included Director, Research Investment at the National Breast Cancer Foundation (NBCF), Group Leader in the Cancer Research Program at the Garvan Institute of Medical Research, and a conjoint appointment in the Faculty of Medicine at the University of NSW.
In 2005, Alison was elected to the Board of Directors of the Australian Society for Medical Research (ASMR), serving as ASMR President in 2010 and served as a Director on the board of Research Australia, from 2011 to 2018.
Alison enjoys living close to the beach in the Eastern suburbs of Sydney with her USA-born/surfing obsessed husband and two daughters.
Our Scientific Advisory Board
The current members of our Advisory Board include.
Our SAB provide all expertise pro-bono and receive no remuneration.
Professor Ian Alexander
Professor Ian Alexander BMedSci MBSS (Hons), PhD, FRACP (paeds), HGSACG, FAHMS is head of the Gene Therapy Research Unit, a joint initiative of Sydney Children's Hospital Network and the Children's Medical Research Institute in Sydney. He is the Chair of of the Sanfilippo Children's Foundation Scientific Advisory Board.
Associate Professor Kim Hemsley
Associate Professor Kim Hemsley BAppSci (Med. Lab. Sci), PhD, is a neuroscientist and is the Head of Childhood Dementia Research Group, College of Medicine and Public Health, Flinders Health & Medical Research Institute, Flinders University.
Dr Nicholas Smith
Dr. Nicholas Smith MBBS (Hon), DCH, FRACP, PhD (Cantab) currently heads the Department of Paediatric Neurology at the Women’s and Children’s Hospital in Adelaide.
Associate Professor Sarah Spencer
Associate Professor Sarah Spencer is a Principal Research Fellow at the School of Health and Biomedical Sciences at RMIT University in Melbourne.
Associate Professor Karin Borges
Associate Professor Karin Borges is a neuroscientist who is Head of the Neurological Disorders and Metabolism Laboratory at University of Queensland School of Biomedical Sciences.
Dr Jana Vukovic
Dr Vukovic is a neuroimmunologist at the University of Queensland who heads the Neuroimmunology and Cognition Laboratory which is investigating the interactions between the brain and the immune system in health and disease.
