Our team
Our organisation is guided by an inaugural Board of Directors comprising professionals across the USA, UK, and Australia.
Together, our incoming 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.
BPTF Families also has an inaugural Advisory Committee – an inclusive space for individuals who bring valuable clinical expertise, lived experience, or strategic insight but prefer not to take on the legal or time commitments of a formal Director role. This committee offers a meaningful way to contribute to BPTF Families' mission – shaping priorities, informing strategy, and amplifying impact. We have two clinical geneticists, a neurologist and an ENT specialist who will hold seats on this Committee, and plan to extend this invitation further.
BPTF Families benefits from a small existing voluntary Working Group of parents who help with idea generation and sound boarding, behind-the-scenes planning and administrative tasks, as well as moderating chat and posts in WhatsApp and Facebook groups. There is huge goodwill from this group to take forward activities under a work plan that flows out of the Board's overall Strategic Plan for the organisation.
Lauren Geatches
(G.A.I.C.D)
Founder / Inaugural Executive Chair
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 to stewardship of BPTF Families.
Lauren’s daughter (now 4) was the first person in Australia 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
Anna Capovilla
Nominated Deputy Chair 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.