Providing information and support to families caring for a child with an undiagnosed or rare genetic condition.
SWAN Staff and Governance
Our structure and governance
SWAN Australia’s Board consists of a Chair, Deputy Chair (current vacant), Treasurer, Secretary, an Ordinary Member, and our CEO, (formally filled by our Founder – Heather Renton, who departed SWAN in August 2023. The SWAN Board is in process of employing a new CEO). Our board members’ professional experience spans both the health and disability sectors (with a collective experience of over 65 years), leadership, finance and law. Our directors contribute their valuable expertise on a pro bono basis. You can contact any of our board members by emailing info@swanaus.org.au.
The Board meets monthly and approves, monitors and reviews the organisation’s strategy, finance and budget, sub-contracting arrangements and risk management plan. You can view or download a copy of our Strategic Plan.
SWAN gratefully acknowledges our dedicated volunteers for their important contributions.
SWAN Australia is an incorporated association and Australian registered body and is a small-sized charity.
Meet the team
CEO – Vacant
Maya Pinn – Administration Officer
Maya joined SWAN Austalia in June 2023 as the Administration Office. In her role, Maya provides admin support for SWAN families via phone, email and social media. She assists the CEO with advocacy work, submissions and events.
Maya is a mum to two children, her eldest is a SWAN child with a Rare Diagnosis of ‘IQsec2 Associated Disorder’. Maya owns her own small business called “RareWear”, an adaptive clothing range for children; helping parents and carers dress their children with ease. Maya also has a Bachelor in Health Sciences with Majors in Exercise Science and Disability & Inclusion. You can contact Maya at maya@swanaus.org.au or 0466 122 290.
Meet the SWAN Board
Janet Collins – Chair
Janet joins SWAN after spending 25 years working in the strategic planning, fundraising, events management, service delivery and evaluation domains. Her experience spans a wide range of roles, having led teams and projects in the disability and community services sectors. Janet is a member of the Australian Association of Social Workers, the Australian Institute of Company Directors and Principal Consultant at PA Strategy Consultants. She brings to the boardroom a strong focus on stakeholder engagement and strategic partnerships, and an understanding of the hurdles facing SWAN families from her personal journey as the primary carer of her son with an undiagnosed condition.
Vacant – Deputy Chair
Emma Amalfi – Treasurer
Emma has worked in the finance sector over the last ten years, both in Australia and overseas. She brings with her a wealth of knowledge of both the commercial and charity sectors. Emma’s experience includes financial statements, taxation, forecasting, budgets and business growth.
Deborah Bianco – Secretary
Deborah is a current Masters of Genetic Counselling student, who recently commenced a new role in genetic services within the public health sector. She has a PhD in medical research and has managed submissions and reporting for numerous national and international grants. With over 15 years of experience in project management, ethics and compliance, including 7 years in the not-for-profit sector, Deborah brings a diverse skill-set to the SWAN board.
Rod O’Donohue – Ordinary Board Member
Rod’s education is in the fields of Economics and Government. He also has experience in business planning, resource management, and financial modelling and recruitment. Rod is currently Senior Business Development with Carers Queensland assisting to deliver the Your Caring Way Programme. He is Treasurer for the Fresh Futures Inc. a programme that assists Children with Disabilities transition to the workforce on leaving school. With 9 grandchildren and an obsession to be a decent golfer, Rod’s calendar is pretty full.
Helen Johnson – Peer Support and Information Officer
Helen, her husband Peter and their 2 sons, Jayden and Ben, live in regional Victoria. Helen is a SWAN mum and has worked and volunteered in the disability sector for over 25 years in both client-facing and advocacy roles. She has extensive experience as a board member and ambassador for a number of disability organisations. In her role at SWAN, Helen provides compassionate peer support over the phone, shares knowledge and provides updated information in relation to healthcare and disability services. You can book in a free call with Helen via Calendly.
Contact Us / Media Enquiries
- PO Box 390 Fairfield VIC 3078
- 0404 280 441
- info@swanaus.org.au