SWAN Staff and Governance

Our structure and governance

SWAN Australia’s Board consists of a Chair, Deputy Chair, Treasurer, Secretary and ordinary board members. 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

Alison McIvor – Chief Executive Officer

Alison has worked in a range of senior executive roles over more than 25 years – across sectors such as finance, construction, transport, education and the not-for-profit space. She has skills including strategy development, business planning, project and program management, transformation and change management, advocacy, marketing and communications.

Importantly, Alison also has lived experience of two rare genetic conditions, so is deeply passionate about the undiagnosed and rare conditions community. She has served on a number of advisory boards and committees in the sector and also has well developed skills working with volunteers and providing peer support. You can contact Alison at alison@swanaus.org.au or 0404 280 441

Maya Pinn – Administration Officer

Maya joined SWAN Australia 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 (Honours) 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

Matthew Contuzzi – Chairperson

Matthew is a People & Culture Leader within the professional services field. With vast experience across Asia and Global organisations, Matthew builds company cultures in partnership with executive teams and leaders. Matthew is an experienced executive coach and prides himself on building safe, inclusive and high performing organisations.

Matthew is a dedicated member of the SWAN community as the parent of a child with a rare genetic disorder. Having utilised SWAN’s network and services, Matthew’s mission is to give back intentionally and meaningfully to support others that go through a similar journey.

Libby Gott – Deputy Chair

Libby is a values-based leader and community advocate working within the Victorian local government sector. Libby is passionate about driving equitable and inclusive civic and community-centered outcomes, and has previous experience in international development and the creative arts.

Based on Wurundjeri Woi Wurrung Country, Libby is privileged to play a key role in championing positive change for the rare and undiagnosed community across Australia, and has only recently joined the SWAN community in 2025 as the parent of a child with a rare genetic condition. Her child was diagnosed in 2022 at 8 months of age, thanks to being eligible for Gene-STEPS – a major research study with the Murdoch Children’s Research Institute (MCRI) using rapid genome sequencing to diagnose genetic causes of epilepsy in infants faster, aiming to improve treatment, developmental outcomes, and prognosis and led by the International Precision Child Health Partnership (IPCHiP) delivered in Melbourne, Toronto, Boston and London.

Libby understands the challenges and isolation that families face and hopes to be able to help them on their journeys, getting the best possible support along the way.

Craig Campbell – Treasurer

Craig is a qualified chartered accountant with a career spanning over 20 years in a range of small, medium and large corporate organisations. He has worked in sectors such as education, health and aged care. Craig’s experience includes senior management roles in financial management accounting, budgeting, forecasting, reporting and governance and compliance.

Jessica Sutherland – Secretary

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.

Jitin Cherian – Board Member

Jitin Cherian is a transformation leader with over 20 years of experience driving large-scale strategic change across financial services, life sciences, and technology. He has led multi-million-dollar mergers, digital transformation programs, and enterprise-wide adoption initiatives, ensuring seamless integration of people, processes, and technology.

Beyond his professional career, Jitin is a dedicated father of two young daughters, which fuels his commitment to advocacy and meaningful change. He understands firsthand the challenges families face when navigating complex systems and is passionate about ensuring support, resources, and community are readily available to those who need them most. As a board member at SWAN, Jitin brings his strategic expertise and deep commitment to strengthening the organisation’s impact. His goal is to support SWAN’s mission by empowering families, amplifying their voices, and driving meaningful change.

Kate Herbert – Board Member

Kate brings over 20 years of expertise in corporate strategy, marketing, entrepreneurship, and investing to the SWAN Australia board. As founder of Waggly, she successfully scaled the ecommerce business to seven figures in recurring revenue before leading its acquisition by a publicly listed company, where she subsequently served on the executive team.

Kate has since transitioned her focus to venture capital, driven by her passion for supporting founders who are creating positive change in the world. As a mother to two young boys, Leo and Louis, she brings both personal insight and professional acumen to her commitment to investing in people and communities that drive meaningful impact.

Kate joined SWAN’s board after witnessing firsthand the substantial difference this community made in the life of a friend who is a SWAN parent. As a board member, she is dedicated to championing SWAN’s mission and elevating awareness of the vital work the organization does to support families and communities across Australia.

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.

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.