About Us
Adult Leadership Cooperative (ALC) – FASD Changemakers
Our Beginning
Twenty years ago, two adults with FASD came together at a conference to challenge the system status quo. To do something no one really thought people with FASD could do – change the message because if they didn’t…..who would?
Because, they said, it is what you DO with your experience that changes things……NOT the experience itself.
Who We Are Today
Today, the ALC of FASD Changemakers is an international group of adults, all with diagnosed FASD. We include core leadership members in 5 countries who lead the work that has changed both the direction and the thinking in the field of FASD.
As a group, we have experienced all the events commonly associated with FASD but have learned how to overcome obstacles, maximize potential and re-define success. We use our combined living experience to work individually and together as consultants, advisors, trainers, presenters, mentors, group moderators, advocates, bloggers, and as various university research project team members.
As well, we develop and lead our own survey research, which has received wide interest from institutions, and is currently being used to help focus research directions and questions.
Our Own Research
- Our first survey on the health of 500 adults with diagnosed FASD was published in 2020.
- Our second survey on the quality of life of 450 adults with diagnosed FASD was published in 2024.
- Our third survey on funded service and unfunded support use in diagnosed adults is currently underway.
It is what you do with your experience that changes things
ALC – FASD Changemakers