About the
Austin McDowell Foundation
We exist to ensure no child waits years for answers about their vision. Through
evidence-based screening, accessible education, and empowering advocacy, we're
creating a future where every child with CVI gets the support they need to thrive.
VISION
A world where every child with cerebral visual impairment is recognised, understood, and given the support they need to flourish
MISSION
To improve outcomes for children with CVI through accessible screening tools, evidence based education, and empowering individuals to advocate for change
CORE VALUES
Child and family centred
Strengths based approach
By the community for the community
Evidence based practices
Equity and inclusion
BUILT ON RESEARCH AND LIVED EXPERIENCE
The story behind the Foundation
The beginning
When Nicola McDowell was 16 years old, she was a competitive swimmer with her sights set on the 2000 Sydney Olympics. She was driven, disciplined, and determined. Then, without warning, she suffered a massive brain haemorrhage. Against the odds, she survived. But her vision - and her life - would never be the same.
The brain injury affected Nicola's visual processing in ways that weren't immediately obvious. Her eyes worked fine. She could see. But something was different. She struggled with tasks that seemed simple to others. Reading was exhausting. Finding things took effort. Busy environments were overwhelming. She knew something wasn't right, but no one could tell her what it was.
17 years of not knowing
For 17 years, Nicola lived with visual processing challenges she didn't even realise were vision-related. She'd been diagnosed with a right hemianopia - a loss of vision in her right visual field - but assumed that was the extent of her visual issues. The exhaustion from reading, the difficulty finding things, the overwhelming nature of busy environments? She thought that was just her. Maybe she wasn't as capable as others. Maybe she just had to work harder.
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She didn't search for answers because she didn't know there were answers to find. She simply adapted, compensated, and pushed forward with the same determination that had driven her as a young athlete.
During this time, Nicola pursued education and training in vision rehabilitation. She became a qualified vision education and rehabilitation specialist, helping children and young people understand and adapt to vision impairment. The irony wasn't lost on her later - she was supporting others with vision challenges while not fully understanding her own.
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It wasn't until she was 33 years old that everything changed. Through her work in vision rehabilitation, Nicola learned about cerebral visual impairment (CVI) at a conference. During a keynote presentation by Professor Gordon Dutton, she recognised herself in the descriptions of children with CVI. The struggles she'd lived with for 17 years finally had a name, an explanation, a reason. It was both a relief and a revelation.
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The diagnosis changed everything. It explained her past, but more importantly, it illuminated a path forward. Nicola pursued her doctorate, specialising in CVI research and education for children who are blind or have low vision. She became a Senior Lecturer and researcher at Massey University. Now she understood - both academically and personally - what CVI meant.
The turning point
That diagnosis changed everything. Nicola realised she wasn't alone - there were countless children experiencing what she had experienced, struggling in silence, unidentified and unsupported. As a researcher, she knew CVI was the leading cause of visual impairment in children in developed countries. As someone with CVI, she knew how devastating it was to go undiagnosed.
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She also knew from her professional work how hard it was to identify CVI visual issues in children. Many children, especially in mainstream schools, were falling through the cracks. But from personal experience, she knew something else: visual assessment could be stressful and cause anxiety.
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What if there was a better way? What if screening could be accessible, affordable, and even fun? What if she could create a tool that made CVI identification possible for anyone, anywhere - without the stress and anxiety she remembered from her own assessments?​ The seed of an idea was planted.
Creating the Austin Assessment
Nicola combined her research expertise with her lived experience to create the Austin Assessment - named after the boy who helped to inspire it - a validated screening tool that measures visual perceptual abilities through a simple, engaging card-matching game. The app makes CVI screening accessible to families and professionals worldwide.
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But Nicola knew a screening tool alone wasn't enough. Children need more than identification - they need education, support, and people who will advocate for them. This is why the Austin McDowell Foundation exists.
The Foundation represents Nicola's commitment to ensuring no child has to wait 17 years for answers. Through three interconnected pillars - Screen, Learn, and Empower - the Foundation provides the tools, knowledge, and support that children, families, and professionals need to create real change.
How we work
The Austin McDowell Foundation operates with a clear philosophy: give people the tools, knowledge, and confidence to create change themselves.
Child and family-centred
We put children and their families at the heart of everything we do, ensuring their voices, needs, and experiences shape our work.
Evidence-based practices
We are committed to using and promoting research-backed, data-driven approaches to improve outcomes for children with CVI.
Strengths-based approach
We focus on the abilities and potential of children with CVI, empowering them to thrive and celebrating their unique ways of experiencing the world.
Collaboration and innovation
We work together with families, professionals, and researchers to drive meaningful progress in CVI awareness, support, and treatment.
By the community, for the community
We believe in grassroots solutions driven by those with lived experience. We honour and learn from the insights of individuals with CVI, their families, and caregivers, recognising them as experts in their own journey.
Equity and inclusion
We are committed to breaking down barriers so that all children with CVI, regardless of their circumstances, have access to the resources and support they need.
THE FOUNDATION TEAM
The Austin McDowell Foundation is guided by a board of trustees and associates who bring expertise in education, vision rehabilitation, research, and advocacy. Together, they ensure the Foundation remains focused on its mission of improving outcomes for children with CVI.
Nicola McDowell
Founder
Nicola is the founder and creator of the Austin Assessment, and a Senior Lecturer in the Institute of Education, Massey University.
Her research interests include understanding and supporting children and young people who have cerebral visual impairment, empowerment of children and their parents/caregivers and equity in education.
She is a renowned international speaker on cerebral visual impairment, sharing both her research and personal experience with a focus on improving outcomes for others with the condition.
Mari Booysen
Foundation Trustee
Mari is Senior Manager at the Massey University Foundation, and an accomplished and self-motivated leader with more than 20 years of experience in the tertiary sector, specifically in philanthropy, fundraising and alumni relations, relationship management and stakeholder engagement.
Before immigrating to New Zealand in 2019, she was the Director of the Advancement and Partnerships Office (APO) at the Tshwane University of Technology.
Diogo Freire
Foundation Associate
Diogo has a background in product innovation and delivery and focuses on using data and user insights to create impactful digital solutions. He's worked with a broad range of businesses in New Zealand and around the world, always aiming to deliver solutions that positively impact people's lives.
He's a proud dad of two young boys. In his spare time, Diogo is a fitness trainer who focuses on strength and conditioning for adaptive athletes. He's passionate about creating and supporting inclusive and accessible opportunities in that space.
Helen St Clair Tracy
Foundation Trustee
Helen is the Founder and Chair of the Board of Trustees of the international CVI charity CVI Scotland.
With CVI expert Professor Gordon Dutton, Helen is one of the two lead writers for the CVI Scotland website, which is used in nearly every country in the world.
Helen is also an Honorary Lecturer of the Medical School of the University of St Andrews. Helen's son has CVI and both their lives were transformed with understanding of the condition. Her passion is getting support to people affected by CVI.
Jordan Davis
Foundation Trustee
Jordan is a medical specialist who treats pain and focuses on rehabilitation.
He is also a father to a determined young daughter with CVI and strives to advocate for her and anyone with visual difficulties.
He supports the team with medical advice and guidance to improve CVI awareness.
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Angus McDowell
Comms and Admin Assistant
Angus is a second year Chemical Engineering student at the University of Canterbury, bringing analytical thinking and a methodical approach to his role at the Austin McDowell Foundation.
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Growing up with a close and personal understanding of CVI, Angus has a genuine connection to the Foundation's mission and the difference it makes to individuals and families.
When he is not buried in engineering assignments, he can usually be found on the football field, volleyball court, or golf course.
Philippa Butler
Foundation Trustee
Philippa is a Senior Lecturer in the Institute of Education, Massey University.
Her teaching interests are in research methodology and methods, and her research interests include ethnic group identifications and issues of equity in education.
She is an expert in qualitative, quantitative and mixed methods research and is an experienced and accomplished writer.
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Matt Lamont
Foundation Associate
Matt is a seasoned Software Engineer with 25 years of industry experience, across a broad range of technologies and business sectors.
He has spent most of his career building digital products, from individual contribution through technical leadership and people management.
When he is not spending time with his two children or working on his house, he enjoys supporting local coffee roasters by drinking as much of their product as possible.
Join us in creating change
Whether you're a parent, professional, researcher, or supporter, there's a role for you in improving outcomes for children with CVI.
Medical Disclaimer
The Austin McDowell Foundation provides educational information and screening tools only. We do not provide medical advice, diagnosis, treatment, or clinical support. The Austin Assessment is a screening tool, not a diagnostic tool. Always consult qualified healthcare professionals for medical concerns. Information on this website is for educational purposes only and does not replace professional medical or educational services.