Our Team
Our team is made up of passionate people committed to driving research towards a world free of Sanfilippo syndrome.
Rebecca Merryfull, Campaigns and Fundraising Specialist
Rebecca has over 15 years experience in marketing and communications, with a focus on delivering exceptional digital marketing campaigns. Rebecca has a Bachelor of Business and Masters in Communications.
She has worked across large and small organistations and delivers results-oriented strategies with tangible outcomes.
When she is not at work, Rebecca enjoys spending time with her family.
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.
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.
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.
Dr Lynn Weekes AM
Dr Lynn Weekes is a quality use of medicines expert and company director. She trained as a pharmacist and practised in community, hospital, policy and research settings. She holds a MSc degree in Pharmaceutics and a PhD in Community Medicine.
Lynn was the founding CEO and Managing Director of NPS MedicineWise where she transitioned the company from a start up with focus on medicines to broader issues about good decisions in health care. In this role, Lynn brought together a talented team to support the best use of medicines and medical tests.
Lynn is an Adjunct Professor of Pharmacy at the University of Queensland. She is a Non-Executive Director and Board Chair of the International Society to Improve the Use of Medicines and a Member of the Expert Advisory Group of the Australian Institute of Clinical Governance. She is a graduate of the Australian Institute of Company Directors and an alumnus of INSEAD Business School.
Lynn was awarded a Member of the Order of Australia in 2013 for her services to quality use of medicines.
Dominic Tilden
Dom is a health economist and runs his own health economics consulting company. In this role, he helps facilitate public reimbursement and patient access to a range of health technologies across many health conditions. He takes great satisfaction in being a part of the process which enables people disadvantaged by ill health to improve their health outcomes.
Dom was born and bred on Sydney’s northern beaches but managed to never learn how to surf. However, he doesn’t mind the odd round of golf or some slow running along those beaches in between operating his business and being a dad to his three kids.
Nicole Stanners
Nicole Stanners is the Founder of Muze Women, a female cycling apparel brand, and is a business, marketing and innovation consultant and advisory board member, as well as an ex Chief Marketing Officer.
Nicole has over 25 years' experience in business, marketing and innovation from small to large corporates in local, regional and global roles, specialising in the Fast-Moving Consumer Goods (FMCG), alcohol and apparel sectors, working for businesses such as Unilever, Mondelez, Diago and Campari.
Nicole has a passion for big ideas, diversity, social causes and sport, particularly triathlon and cycling, (competing at an elite amateur level) which led her to start her own business, Muze Women in 2023. Nicole lives in Sydney with her partner, two children and a dog, who she is doggedly focused on ensuring they adopt her love for these sports!
Our Scientific Advisory Board
The current members of our Advisory Board include.
Our SAB provide all expertise pro-bono and receive no remuneration.
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.
