FASD-CAN supports a group of rangatahi / young people and adults living with FASD via an innovative, co-led programme of events that the cohort has named ‘Tītoki’ (previously IDP – Individuals Development Programme).
Tītoki is a FASD-CAN programme of events which has evolved since 2023 and aims to foster whanaungatanga, connection and friendship for people with FASD. Through it, participants have been gaining mutual āwhi / support, encouragement and an increased sense of mana.
The programme is now evolving, by their request, into strengthening their knowledge and skills to enable them to advocate for their own rights and needs, as well as those of their supporting communities and their whānau.
There are regular ‘Pizza Clubs’ in Tāmaki Makaurau, Pōneke and Ōtautahi (Auckland, Wellington and Christchurch) which usually include an activity such as bowling or laser tag. In Tāmaki, these are run jointly with The FASD Centre Aotearoa; and in Ōtautahi with Youth and Cultural Development.
However, the young people wanted to build a wider FASD community, so FASD-CAN runs a bi-annual weekend camp at El Rancho, an outdoors conference centre north of Wellington (photo – November 2025).
There are activities such as kayaking, climbing, archery, swimming, walks – and always a bonfire with marshmallows. Participants can also learn about how and why their own brains work differently, as well as strategies for self-awareness and self-regulation. These discussions build self-confidence and develop self-expression – and for some, kaiārahi / leadership skills. Essential space for downtime is always factored in.
Each person with FASD is able to bring a support person, parent or caregiver with them, and Tītoki events are also opportunities for these supporters to connect, share their stories, learn more about FASD and create their own important networks.
At time of writing, we believe the format and kaupapa / purpose of these camps are a global innovation unique to Aotearoa NZ.
These statements were created with workshopped input from participants:
Some kaiārahi / leaders have appeared in videos, met with policy-makers, presented at conferences and contributed lived-experience to training and webinars.
These opportunities for self-advocacy are driven by their growing awareness of the lack of understanding of FASD across education, justice, health and policy, as well as among the general public. The group recognises they are the experts in FASD, and FASD-CAN supports them and their whānau /families in this.
In March 2025, the group shared their experiences, guided by facilitator Mike Sansom: stories of misunderstandings in education and services, barriers to diagnosis, and inequitable access to the support which is available to others with similar disabilities. Most of all, they felt unheard: “The system is failing us.”
This led to a manifesto of 8 key messages on FASD for policy-makers, devised through living experience to enable better lives for them and for their families.
The 8 Key Messages
The rangatahi know they can use the 8 Key Messages in any situation, around the dinner table with whānau, amongst friends, talking to a teacher or social worker, interacting with the media, policy makers or MPs – knowing that others are saying the same thing.
Click here or on the image below to find out more and to download a pdf of the 8 Key Messages.
Anna Gundesen, FASD-CAN Navigator in Tāmaki Makaurau / Auckland and training facilitator, is our project lead for Tītoki.
Mike Sanson is a key facilitator for Tītoki. Mike is a highly experienced international development specialist who has worked for years in the social inclusion and disability space at policy level.
Cassia Mulraney is our Tītoki Coordinator, organising everything that goes on behind the scenes for the camps and more.
The original kaiārahi or leaders with lived experiencee were Byron Jones, Teowai Te Moana Clayton and Noah Langdon-Reidy – exceptional young people who helped develop the activities for the early weekend camps.
We couldn't present our weekend camps without other FASD-CAN kaimahi / staff, volunteers from other organisations, parents, caregivers and guest mentors as available, and we thank all of them.
In 2025 the group developed a name, and with support from FASD-CAN board member Darryl Roycroft, a visual identity.
The name comes from the whakatōkī / saying: ‘The tītoki blooms in its own time’ – which also applies to those with FASD.
A logo and four graphic elements were created for use across design work.
Click here or on the image below to check out our brand story.
We have created four posters for Tītoki which can be used anywhere. The beautiful photos in these posters were taken by Jackie (first photo, left), one of our rangatahi with FASD, in November 2025. Jackie was the official photographer for the November weekend camp.
Click on the thumbnails below for bigger versions.
The FASD community is now a growing movement – Tītoki is a space where young people with FASD feel accepted with no judgement. They have an extraordinary compassion for each other and evidence of growing courage as they share their own stories of struggling in a world that 'doesn’t get them'.
Perhaps the strongest indicator of the success of Tītoki is the energy and engagement at every camp, the enthusiasm for the next one and the increasing numbers who want to participate.
Byron, one of the main kaiārahi / leaders, is happy: “We are building an FASD community, an FASD whānau. This is what we need.”
Georgie, an emerging leader, has written to six government ministers telling them of her lived experience of FASD and of being in care. Her email says, “I ask respectfully that you allow space for lived experience to inform national decision-making. Those who have walked through the system carry insights that statistics alone cannot provide.”
As the project lead, Anna, has observed, “Each camp has been wonderful in its own right. It's incredible to see how much growth and confidence is emerging. We need a secure future of ongoing Tītoki events to foster this.”
There is no doubt that Tītoki has changed lives – and we feel it’s essential that it can continue to do so. Many participants are now asking for more information on the impact of alcohol and brain development. Other requested topics include self-awareness of how FASD is affecting them; information on substance use and addiction; skills and resources to strengthen their voices; more activities to build confidence and more opportunities for advocacy. And of course more opportunities to hang out with their friends! Watch this space.
This video was made in 2025 and features some of the rangatahi and their whānau. It won runner-up in the inaugural FASD Film Festival in Canada.
Watch the award-winning film below (10 mins).
Click below to read roundups and see great photos of some previous Tītoki events.
