FASD has been part of Leigh’s life since her first postgraduate position as a geneticist in a hospital lab. Her passion for supporting those affected by FASD arose due to the teenage diagnosis of her son, who was internationally adopted (photo – Leigh with proud son Byron).
Leigh joined the FASD-CAN board in 2016, first as a committee member, then treasurer and finally Chairperson of FASD-CAN in 2021.
Over this time, she contributed to many of the organisation’s activities including delivering workshops on FASD to professionals, working with other disability and inclusive education networks, advocating at policy level, promoting awareness of FASD and giving support and voice to those with FASD and their whānau.
In 2026, Leigh became Co-Chair, sharing the role with Darryl Roycroft, but stepped down from the role entirely in November 2026. She will, however, be continuing in a new part-time role as Senior Scientific Advisor.
This short video was presented at FASD-CAN's 2026 AGM.
Christine Rogan ONZM
Leigh, you will be sorely missed by the FASD-CAN whānau! We have known each other over many years and you’ve always inspired me with your steadfastness, wisdom, endurance and compassion. At times I wondered where you found the time and energy with a busy household to manage, but you were always there for the FASD community with calm assurance. You stepped up when our founding Chairperson, Claire handed on the baton, and as we all know, Claire left very big shoes to fill!
Leigh, you can retire from this role knowing FASD-CAN has grown under your guidance in strength and outreach during tough times. With aroha, I wish you and your lovely whanau and the FASD-CAN team all the enjoyment this crazy, dynamic and always interesting life has to offer! Ka kite ano until we meet again (maybe over coffee in Wellington some time?).
Claire Gyde, Founder of FASD-CAN
I first met Leigh on a taxi ride to the airport following a presentation I had given on FASD at the University of Auckland. What began as a chance encounter quickly became a conversation grounded in shared experiences, common purpose, and a passion for improving outcomes for people living with FASD. We soon discovered another important connection: our sons are the same age, and have travelled remarkably similar pathways through life.
Over the years, we have shared the catastrophes and celebrated the triumphs, supporting one another through the unique challenges and joys that come with raising children with complex needs. From that first meeting grew a valued friendship and partnership in advocacy that has spanned many years.
Leigh took over the role of Chair from me in 2021, having already served on the committee for several years. Throughout her time in governance, she has brought unwavering commitment, sound judgement, and a deep understanding of the challenges and opportunities facing individuals and whānau living with FASD. Leigh has always been generous with her time and brought authenticity, compassion, and determination to this work. Her contribution has left a lasting legacy, and the organisation is stronger because of her dedication to this kaupapa.
Kia kaha, Leigh, and thank you for all that you have given.
Rose Hawkins, OT Regional Coordinator
Leigh has given her all to the role of Chair of FASD-CAN, using her huge energy and scientific mind to steer the way forward for maximum impact of FASD-CAN. The organisation has broadened under Leigh's leadership to take on direct support for people with FASD themselves in addition to their whānau and caregivers. Importantly FASD-CAN has also developed more understanding of te ao Māori on Leigh's watch. Thanks for all you've done Leigh for the FASD community.
Harsh Vardhan, Manatū Hauora / Ministry of Health
Thank you Leigh, for all you have contributed to FASD-CAN during your time at FASD-CAN. Your knowledge, commitment and perspective have been greatly valued.
It has been a pleasure working with you, and we look forward to continuing to work together in your Senior Scientific Advisor role.
It was with mixed feelings that I reached the hard decision to step down from the FASD-CAN Board. I did so knowing this entity, which I inherited from Claire Gyde, will now be in the capable hands of a highly skilled Board, led by Darryl Roycroft, and of course our wonderful CEO, Stephanie, who has steered FASD-CAN through a period of rapid growth with competence and calm.
I hope you will indulge me in a little retrospection, a bit of crystal ball-gazing.
FASD-CAN was founded in 2013 as a caregiver support group (hence the name – FASD Care Action Network) but also with a clear vision on advocacy, addressing the need to do something about improving the lives of folks with FASD and their whānau.
Thirteen years on we are quite a different organisation.
• We continue to provide support in many ways to whānau affected by FASD via our Kaiwhakatere / Navigators, resources, support groups, and training.
• We present professional training
• We have a programme of activities for those with FASD
• We are on numerous advisory boards and community organisations
• We are members of, or advisors, on research programmes,
• We are widely recognised with our name cropping up on the websites of others, in official documents, and even internationally.
• We have consciously worked to be a Tiriti-aligned organisation.
There are some wonderful things which haven’t changed – mostly the passion, resilience and wisdom of those who work for, govern and volunteer for FASD-CAN.
Sadly, FASD eligibility for desperately-needed Disability Support Services also hasn’t changed. How much advocacy in terms of letters and doors knocked on; how many politicians who still find it a problem simply too big to address? This must change.
But being a glass-half-full sort of person, I am excited by the current work underway, led by Ross Porter, to seek a judicial review of eligibility to DSS, so we will see what happens.
Looking to what else is on the horizon:
• the implementation of the FASD Action plan and what that will mean for families
• the pilot project with Te Kupenga Hauora Ahuriri to bring the diagnosis of FASD into the community and to develop community support pathways
• Social Service Providers Accreditation, which we are close to achieving
• we continue to deliver professional development across many sectors – learning support coordinators, social service providers, corrections, sexual wellbeing – just in the next few months
• we are working on obtaining funding to enhance advocacy skills and opportunities for those with FASD.
In ending I’d like to acknowledge the contributions of past Board members and kaimahi, who gave more than 100% because they believe in the value of what they are doing to bring about change.
It’s dangerous to call out individuals, when so many have given so much, but I do have to say thank you to four long-standing kaimahi who have built the organisation through their knowledge, communication and personal skills – Anna Gundesen, Kim Milne, Janet and Kathy. What a source of strength, support, knowledge, connections and friendship they have been.
As a scientist by training, and with an interest in the effects of substances which cross the placenta int the unborn baby dating back decades, I have enjoyed following developments in FASD research. Current understanding of brain-based changes, epigenetics and interactions with trauma, hold promise for a future with more accessible diagnosis and effective interventions.
In leaving the Board, I have a new title – Senior Scientific Advisor – and I’m around to help when I can. I hope my path crosses with many of you.
Good luck to FASD-CAN – and thank you to all who work with us and support us.
Ngā mihi
Leigh
