SWAN Staff and Governance

Our structure and governance 

SWAN Australia’s Board consists of a Chair, Deputy Chair, Treasurer, Secretary and ordinary board members. 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 quarterly 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 Australia is an incorporated association and Australian registered body and is a small-sized charity. We gratefully acknowledge our dedicated volunteers for their important contributions.

Meet the team

Syndromes without a name CEO, Jason Doherty

Jason Doherty – Chief Executive Officer

With over two decades of dedicated service in not-for-profit leadership and executive roles, Jason brings a wealth of experience and a deep-rooted passion for making a positive impact in the community. His career has been defined by his commitment to enhancing the lives of individuals across various sectors, including early childhood, disability, and mental health organisations.

Based in the vibrant city of Geelong, Jason is not only a driven professional but also a devoted family man. Married with three wonderful daughters aged 22, 19, and 17, he understands the importance of balancing work and family life. Family values are at the core of Jason’s identity, and he cherishes every moment spent with his loved ones.

 

Maya Pinn Bio Photo
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

Steve
Stephen Robinson – Chair 

Steve is married to Kiele, and has 3 kids Kaci 17, Ella 11, Flynn 9. Steve loves being around family and love watching sport now he’s too old to play it. Steve is passionate about helping people in general and Steve started working in Homelessness and Drug & Alcohol Sectors in 2009. Steve then moved to the disability sector in 2021. Steve’s son Flynn, has a rare genetic disorder called Kleefstra Syndrome and my daughter Ella has Autism, ADHD and Anxiety Disorder. Having a lived experience with my family has given Steve a desire to help people in similar situation to our family.

Jessica
Jessica Sutherland – Deputy Chair

Jess has been a member of SWAN since joining in 2022, during the time her infant son Ernie was going through the diagnostic process.  While the diagnosis now has a name of Coffin-Siris Syndrome, it is a rare diagnosis and the SWAN community has provided the most relatable support and guidance to their family.  

 

Jess holds a Bachelor of Business (Management), and over 15 years’ experience in the Emergency Services field – currently working at Triple Zero Victoria as an Operations Manager, which has embedded genuine passion for helping the community and a sense of urgency to anything she puts her mind to.  She hopes to be able to help SWAN thrive as a not-for-profit organisation to ensure its legacy of support, advocacy, and empowerment remains in place for many years to come. 

Craig
Craig Campbell – Treasurer

A qualified chartered accountant with a career spanning over 20 years in a range of small, medium and large corporate organisations within sectors such as education, health and aged care. Experience includes senior management roles in financial management accounting, budgeting, forecasting, reporting and governance and compliance.

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Antonia (Ant) Howard – Secretary

Ant is an Associate Genetic Counsellor at Victorian Clinical Genetics Service (VCGS) and holds a masters in genetic counselling from UTS Sydney. She works in the general paediatric team at VCGS and is involved in research projects at MCRI which aim to mainstream genetic testing in the setting of childhood hearing loss. She was the Administration Officer at SWAN from Feb 2022 – July 2023 and has 4 years of experience as a disability support worker. Ant is passionate about advocating for better outcomes for SWAN families.

Chris S
Chris Senaratne – Board Member

Chris has more than 15 years of experience in commercial, strategy and investment banking roles across the utilities, energy and infrastructure sectors.

Chris became a member of the SWAN Board in 2023. His daughter, Elise, was born with a rare disease, and for three years, his family faced the challenge of not having a diagnosis. Discovering hope through connections with organisations like SWAN and meeting other parents navigating similar struggles, Chris is determined to contribute to ensuring SWAN can sustain its impactful efforts. He aims to support the organisation in continuing its remarkable work, providing assistance to families like his own.

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Darren Pallant – Board Member

Darren boasts 25 years in the water industry, blending electrician expertise with adept project management. His extensive skills include strategic planning, financial acumen, and catalysing business growth through astute networking. Beyond career triumphs, his bond with a friend’s SWAN child sparked a passion for rare disease advocacy.

Darren is a father of three, and is dedicated to improving the lives of children. As a board member, he hopes to champion SWAN’s cause and offer hope to those navigating the complexities of undiagnosed rare conditions in the SWAN community.

Paul West – Board Member

Bio coming.

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
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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