Our team
Our organisation is guided by an inaugural Board of Directors comprising professionals across the USA, UK, and Australia.
Together, our Chair, Deputy Chair, and Directors bring expertise in biotechnology and diagnostics leadership; general medicine and clinical practice; biochemistry; immunology; health research and implementation; rare disease advocacy, policy and politics; governance and risk oversight; and grants and fundraising.
Importantly, five of the six Board seats are held by individuals who bring the dual perspective of being parents to a child (or adult) with a BPTF mutation and leaders in their respective fields.
You can find out more about each our leaders below.
Our Advisor to the Board, Dr Sergio Carmona, based in Geneva, is a clinical and scientific specialist and a former leader within the WHO's Genomics Programme. He is currently a Principal Medical Science Director at Roche Global.
BPTF Families is strengthened by an inaugural Scientific and Clinical Advisory Committee – comprised of committed clinical, scientific and research leaders from seven countries.
The Committee includes professionals in clinical genetics, paediatric cardiology, neurology, hepatology, neuroscience, rare disease bioethics, protein biology/engineering, and genome and chromatin organization.
The Committee is a meaningful mechanism to mobilise and advance BPTF Families' mission – growing the research base, and ensuring our organisations’ own ‘research readiness’, extending our reach through leveraging global networks, and developing tangible outputs to better support the community in their health and care journeys.
BPTF Families benefits from a small voluntary working group of the engaged parents of affected individuals, known as our Family Voices Group, representing four countries.
These committed community leaders help guide the organisation’s direction through, idea generation and sound boarding, behind-the-scenes planning and administrative tasks, as well as community-moderation of chat and posts in WhatsApp and Facebook groups.
There is huge goodwill from this group that helps to ensure BPTF Families is accountable in representing the priorities, expectations and hopes of the community.
Lauren Geatches
(G.A.I.C.D)
Founder / Inaugural Executive Chair, AUS
Lauren’s academic background is in Sociology and Anthropology, specialising in social research to inform health policy and planning.
Formerly a senior health policy specialist for the Australian Government Department of Health, she led teams responsible for health workforce and service distribution. As a Consultant, she specialised in the Australian rare diseases space, researching and authoring papers that looked at workforce, diagnostic pathways, funding of therapies and supports.
She has since studied with the Australian Institute of Company Directors to gain her certification and post-nominals in organisational governance; to better equip her in stewardship of BPTF Families.
Lauren’s daughter (now 4) was one of the first Australians diagnosed with BPTF, and through this journey she was able to weave her professional and personal stories together to become an Ambassador and Advocate at the national level in Australia.
Dr Kate Novakovic
Non-Executive Director,
AUS
Kate is a radiologist specialising in paediatric and women’s imaging, currently based in Sydney. She has a strong interest in rural health and has worked in many regional and remote communities across Australia.
Kate is also a mother of four, including a 16-year-old who was recently diagnosed with a BPTF gene variant. This personal experience has given her a deep appreciation of both the challenges families can face in seeking a rare genetic diagnosis and the importance of connection, information and support following that identification.
Kate is passionate about advancing research and understanding of rare genetic conditions, supporting affected individuals and their families, and helping to build a strong and connected BPTF community. She brings to the BPTF Families Board both her medical experience and her perspective as a parent.
Karla Hansen
Non-Executive Director,
USA
Karla brings a scientific background to the organization. With an academic foundation in Biochemistry and Molecular Biology, Karla has spent her career in the pharmaceutical industry with a specialized focus of prevention and management of infectious diseases through the development of safe and effective vaccines. Her professional background includes leadership roles in Immunology and laboratory roles in Research and Development.
Personally driven by her 24-year-old daughter’s BPTF mutation diagnosis, Karla is dedicated to supporting affected families and advocating for increased research. She aims to leverage her technical background to attract scientific interest and improve outcomes for all individuals living with this rare genetic condition.
Anna Capovilla
Nominated Deputy Chair,
USA
Anna is the CEO of a biotech company and is based in the USA.
She has worked at the helm of multiple companies in sequencing technologies that are currently or will be utilised in BPTF diagnosis, including Illumina, Roche, and Agilent. In these roles, she has led product management, product development, research, and various franchises within these areas.
Her experience includes working on genetic and epigenetic diagnostics, as well as protein technologies.
Anna has strong governance experience, previously holding an investor seat on a prominent biotech board.
Anna's son (now 13) lives with a BPTF mutation. Anna has been actively connecting the BPTF community and exploring research partnerships since his diagnosis.
Julia Fromings Hill
Non-Executive Director,
UK
Julia lives in the UK and is mum to Tobias, born in 2000. Tobias was diagnosed with BPTF in 2017 when the variant was first identified globally.
Julia’s professional background is as an NHS registered Research Nurse in the UK. She has over 20 years experience supporting clinical research studies delivered in acute, primary care and community settings, ranging across the lifespan from pre-term babies to older people in the community, involving a wide range of health conditions and research methodologies. Her current professional area of interest is research engagement for people with intellectual disabilities.
Julia has a Masters degree in Clinical Research and also trained as a Specialist Public Health Community Nurse to work for a while as a Health Visitor supporting new families. Julia spent some years involved with a parent advocacy organisation and continues to champion community engagement projects.
Michael Cook
Non-Executive Director,
AUS
Michael is the Chief of Staff at Charles Sturt University, and has worked in senior government, political office, pharmaceutical governance and university professional roles for the past 25 years.
He served as Chief of Staff to Chief Minister and Treasurer of the Australian Capital Territory from 2015 to 2025. Prior to that, Michael worked as Head of Policy and Research for Medicines Australia, the industry association for the innovative pharmaceuticals industry.
He has also held senior roles in the Offices of the Commonwealth Attorney-General and Health Minister, and in the Prime Minister’s Department.
Michael holds First Class Honours Degrees in Arts and Law from the Australian National University.
Michael was inspired to join the BPTF Families Board and contribute to its mission after having the opportunity to meet with families living with BPTF and other rare diseases. He lives in Canberra with his partner Andra, and two children.