Last October, Shannon Butt attended the Canada FASD Conference as a supported participant through the Lived Experience Leadership Fund. In this interview, she shares why the experience was so meaningful – and why supporting lived experience matters.
Shannon Butt at the Canada FASD Conference.
Why do you think research on FASD is important and what does it mean for you to get involved?
Research on FASD is important because it shapes how people are supported, understood, and treated across their lifespan. For me, being involved means ensuring that lived experience is included alongside data, not as an afterthought. Research has real consequences in people’s lives, and I want those consequences to be compassionate and accurate.
Why did you want to come to the Canada FASD Conference?
I wanted to attend the Canada FASD Conference to learn, connect, and contribute as someone with lived experience. It’s one of the few spaces where research, practice, and lived experience come together. Being in that room reminded me that my voice belongs in these conversations.
What was your favorite part of the conference?
My favorite part was connecting with other people with FASD and allies who truly “get it.” There was a strong sense of belonging and mutual respect. Those conversations were deeply affirming and energizing.
How did this award help make it possible for you to attend this conference?
This award removed a major financial barrier and made attendance possible for me. Without it, I likely wouldn’t have been able to participate. It sent a clear message that lived experience matters and is worth investing in.
What did you learn from others at the conference, and how will it help your advocacy or work?
I learned new ways people are approaching support, advocacy, and systems change across Canada. Hearing from others helped me feel less alone and more confident in my own work. It strengthened my commitment to advocacy that is practical, compassionate, and rooted in real-life needs.
What would you like to tell donors about the difference their support makes?
Your support creates access, dignity, and inclusion. It allows people with lived experience to show up, be heard, and help shape the future of FASD work. The impact ripples far beyond one conference—it strengthens the entire community.
Thank you, Shannon!
As we enter 2026, help amplify more voices like Shannon’s – voices that bring lived experience, insight, and authenticity to important conversations about FASD. By donating to the Lived Experience Leadership Fund, you are not only covering travel, accommodation, registration, and other costs, but also creating opportunities for individuals with FASD and their caregivers to fully participate in national initiatives, share their stories, and shape the future of research and support.