SWAN Staff and Governance

Our structure and governance 

SWAN Australia’s Board consists of a Chair, Deputy Chair, Treasurer, Secretary and an Ordinary Member, and CEO, Heather Renton, who oversees national activities. 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

Profile photo of Heather Renton SWAN CEO with blue background
Heather Renton, CEO

Heather is the Chief Executive Officer and founder of SWAN Australia. Heather draws on her lived experience managing her daughter’s undiagnosed condition for over nine years. She established SWAN Australia to ensure other families did not face their child’s undiagnosed or rare condition unsupported. Heather is a passionate health and disability advocate and is a member of various committees and advisory groups, including:

  • Melbourne Genomics Health Alliance Community Advisory Group.
  • National Congenital Anomaly Advisory Group.
  • Human Genetics Society of Australasia – Education Ethics and Social Issues Committee.
  • Undiagnosed Disease Network International.
  • Rare Disease Now Community Engagement Committee.
  • Rare Connect Undiagnosed and FOXP1 – moderator.
  • Genetic Undiagnosed And Rare Disease (GUARD) Collaborative Member.
  • Community Advisory Group Member for the Discipline of Genetic Counselling, University of Technology Sydney.
  • InGeNA Access and Equity Working Group Member.
Antonia (Ant) Howard – Administration Officer

Ant joined SWAN Australia in February 2022 as the Administration Officer. In her role, Ant provides admin support for SWAN families via phone, email and social media. She assists the CEO with advocacy work, submissions and events. Ant is a genetic counselling student at UTS with a background in disability support care and a graduate certificate in counselling. You can contact Ant at ant@swanaus.org.au or 0466 122 290.

Meet the SWAN Board

Janet Collins - SWAN Chair

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.

Tania bio
Tania Prior-Smith – Deputy Chair

Tania Prior-Smith has spent her career in Senior Management in the pharmaceutical and healthcare industry, and most recently in consultancy specialising in sales, strategy and marketing. She is also currently completing a post grad in counselling. Tania has held voluntary positions with Lung Foundation Australia and ChILD Foundation working on advocacy and support for families. Her experience is also combined with being the mum to a SWAN child, which enables her to have an understanding of the goals and values we set as a foundation and is passionate to make a difference.

SWAN governance Emma Amalfi image meet the team

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.

DebBianco-head shot2
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
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.
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