Last October, Reinier deSmit attended the 2025 Canada FASD Conference as a supported participant through the Lived Experience Leadership Fund.
A passionate advocate and award-winning filmmaker, Reinier shared his lived experience with FASD, highlighting the critical importance of amplifying voices often unheard in research and policy discussions.
Reinier deSmit receives his Third Runner Up award at the 2025 Canada FASD Conference Film Festival.
Why do you think research on FASD is important and what does it mean for you to get involved?
The ignorance and mis-information around FASD is still very high, even in 2026. Since moving to Nova Scotia a couple years ago I have since learned that in some places knowledge of FASD is almost non-existent. This speaks more to ‘education’ on FASD vs the original question of ‘research’… but I feel research is useless if the results and outcomes of that research are never heard by anyone.
Accurate research on this disorder is needed so very much so that the INFORMATION flowing out to people affected (and those who are only ‘disorder curious’) is clear and effective. With clear accurate data people can create solutions and management techniques to help those of us dealing with FASD in real time. FASD can be a lethal problem for many folk and the more we can find ways to ease their journey through their lives the better.
As someone on the spectrum, though high-functioning, I can tell you it really really can be hard making one’s life “work” in a world that can seem crazy even at the neuro-typical realms. I’ve learned a thing or two and I’m hoping my lived experience can help others who haven’t been as lucky as me.
What was your favorite part of the conference?
I absolutely LOVED any of the sessions that involved our Lived Experience young adults! The one session where the front of the room was FULL of these folk – I was almost in tears.
I strongly believe that one thing that is in VERY short commodity in our FASD world is HOPE. And seeing these folks being great examples of how amazing we FASDlings can be, that was awesome.
As mentioned in a few sessions: these folks should be EARNING something – they should NOT be paying travel and accommodation costs themselves for the privilege of sharing their experience with the room. This needs to be addressed, in my opinion, and I strongly encourage our government to figure out a way to appropriately fund these folks so their hard work doesn’t cost them out of their own pockets.
How did this award help make it possible for you to attend this conference?
The $2000 I was awarded meant I only had to spend about $500 of my own money to attend the conference. It covered my travel and food costs. I was able to find accommodation at a friends in Whitby and I took the GO train each day to and from the conference. Without the award I would not have been able to attend. So it helped a LOT!
Did you share your story, experiences, and opinions at the conference?
I had two PRIME ‘high points’ at this year’s conference. My presentation with Dr. Temple was a great experience and felt very good to do. Also, winning an award for my video also was awesome… and having a few minutes on the mic accepting that award was a big bonus. I’d like to do more “live” advocacy work, and this all helped me understand that about myself better.
Meeting soooooooo many people committed to supporting folks dealing with FASD in their lives was inspiring. I belong to a few online groups and they are good, but nothing like meeting folks in the flesh and sharing a palpable energy of support and hope.
What would you like to tell donors about the difference their support makes?
Again: Hope. Without hope, all is lost at the end of the day (in my humble opinion). Seeing others take action and feeling others actual caring helped me recharge my batteries – that way the Why Bother monster has less power in my life (And I’m ready to ride that GO train again, for the cause!)
Thank you, Reinier!
Reinier’s story shows how powerful it is when lived experience is supported and amplified. The Lived Experience Leadership Fund makes it possible for individuals with FASD to attend conferences, share their insights, and shape research and advocacy in meaningful ways. Your donation can directly cover travel, accommodation, registration, and other costs, giving more voices like Reinier’s the platform they deserve.