After meeting some of the Canadian Changemakers group early in 2022, the FASD-CAN Board realised that individuals with FASD are largely unheard in Aotearoa. We knew we needed to remedy this by advocating for the voices of those with FASD.
The first steps of our new journey to directly support individuals were taken by Dr Valerie McGinn, FASD-CAN’s clinical advisor, who arranged for some young adults and caregivers in New Zealand to meet with Changemakers from Canada, US and Ireland earlier this year.
It was followed by two ‘Pizza Club’ evenings in Auckland in August and September 2022, involving some young people who travelled from as far afield as Dunedin. Those who attended these events were delighted to meet others with similar challenges to themselves and had a great time networking over pizza.
In the words of one attendee, "It was so cool to meet young people who were just like me – I could be myself and wasn’t stressed!"
We have also set up a Facebook group for individuals with FASD (over 16) to post, chat and stay up to date with news and events.
For our Hui 2022 we we want to provide a platform for those affected by prenatal alcohol exposure to develop mutual support networks, and to enable them to articulate their own lived experiences if they wish. It will also be an opportunity for caregivers, whānau and professionals to support the voices of those with FASD and their advocacy for FASD awareness throughout Aotearoa.
In the morning of the Hui there'll be a fun networking opportunity for those with FASD to meet, mingle, and share among themselves their life journeys. In the afternoon there will be a session where we hear the voices of our individuals with FASD. This session has been supported by Te Whatu Ora, Health New Zealand.
There will be be talks of relevance to this group too in the main conference room – on financial supports, employment, sexuality, transitions to adulthood.
We are delighted to have two Canadians, CJ Lutke and Katrina Griffin, as well as Jessica Birch from Australia, who will be Zooming in to the opening of our Hui this year with their presentation: 'Challenges and Changes: A conversation with FASD Changemakers'.
CJ, Katrina and Jessica are members of the Adult Leadership Committee (ALC) of FASD Changemakers, a group formed in Canada 15 years ago which is now gaining an increasingly powerful international voice. The Changemakers believe that those affected by FASD should be included in any dialogue around the disorder.
The Changemakers have been involved in training, mentoring and research into FASD as well as formulation of policy. Their achievements are inspirational (see their extraordinary biographies here) and we look forward to them being a guiding light to our young people – and a source of hope for caregivers and professionals who support them.
CJ, Katrina and Jessica will discuss the story of how the group came to be; about hope and inspiration and self-belief. We believe caregivers and individuals alike will have lots to think about after their presentation.
Travel grants are available to rangatahi affected by FASD to attend the Hui from anywhere in Aotearoa.
Click through to the Hui event page for more information and to register.
