Our team is made up of passionate people committed to driving research towards a world free of Sanfilippo Syndrome.
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.
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.
Debra Fucci, Campaigns and Communications Specialist
Debra has worked as a marketing and communications specialist in the health and disability sectors for the past 10 years.
She has a genuine passion for making complex health information easy to understand, and connecting people with the right information to make the right choices.
When she's not at work she's a taxi driver for her teenage son and planning travel adventures to follow the sun.
Mark Lee, Relationship Executive
Originally from New Jersey in the USA, Mark started off his career as a Navy nuke and then jumped into computer hardware back in the early days of tech. Mark chose to leave the corporate world after 25 years for a more fulfilling career in non-profit. He has spent the past two decades providing community-wide support and advocating for youth. His work includes helping create My Friends’ Place, a teen homeless shelter, and working for the Washington State Youth Suicide Prevention Program. He has also been involved in other projects such as CCYJ’s eQuality Project - investigating disparities in the treatment of LGBT+ youth across Washington State.
He has dedicated himself to creating positive change and making a difference in the world.
Having now been in Australia for 4 years, Mark enjoys exploring all Sydney has to offer and hosting dinner parties. The team's favourite game is teaching him to speak like an Australian!
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 Maack, 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: email@example.com
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: firstname.lastname@example.org
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.
Mark is a seasoned CEO who has worked for major, global companies in a variety of board director roles, most recently in private equity. He has a significant history in the beauty business, both domestically and abroad.
Originally from Northern Ireland, Mark is a self-described sports enthusiast. He plays and watches a wide variety of sports and, in his younger years, worked as a full-time professional tennis coach. He now spends the majority of his free time rushing his young son and daughter to their various activities.
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.
Professor Kim Hemsley
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 Michel Tchan
Dr. Michel Tchan BMedSc, MBSS, PhD, FRACP is a Clinical and Metabolic Geneticist and Head of Department, Genetic Medicine at Westmead Hospital in Sydney. He is also the Deputy Chair of the Sanfilippo Children's Foundation Scientific Advisory Board.