Tag: lived experience
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Adult Leadership Collaborative of FASD Changemakers: Forgotten or Ignored? FASD as the Adult Orphan of Disability – Does Anyone Care?
For more than four decades, adults living with Fetal Alcohol Spectrum Disorder (FASD) have been described as the “orphan child of disability,” a term originally used by a provincial court judge in British Columbia who repeatedly encountered individuals with FASD in the justice system without appropriate diagnosis, understanding, or support. Unfortunately, this description remains strikingly…
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ALC of FASD Changemakers: FASD – It’s all About the Dominos: The Big Five
In this workshop, the International Adult Leadership Collaborative (ALC) of FASD Changemakers will explain and talk about what they call “inside the box thinking” behavior to describe how to better understand and think about FASD to support those who are living with it. This information is what they have learned as adults about a way…
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ALC of FASD Changemakers: Behind the Mask – Unravelling Grief in People with FASD: It’s Complicated
This presentation explores the lifelong and often unrecognized grief experienced by individuals with FASD, beginning in childhood and continuing into adulthood. Drawing on the lived experience and professional expertise of the ALC of FASD Changemakers, it examines how ongoing, unacknowledged losses and “don’t ask, don’t tell, never talk about it” patterns of denial impact mental…
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Adult Leadership Collaborative of FASD Changemakers: Lay of the Land Survey #2 Quality of Life Survey in 460+ Adults with FASD
Do not miss this opportunity to hear from the Adult Leadership Collaborative members CJ Lutke, Maggie May, and Katrina Griffin as they present the results of “Lay of the Land Survey #2 Quality of Life Survey in 460+ Adults with FASD”. In 2019, the ALC did its second Lay of the Land Survey on the…
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FASD Changemakers: Lay of the Land Survey #1 Health Issues in 500+ Older Teens & Adults with Dx FASD
The first of two published researches with the Adult Leadership Collaborative Changemakers. It was long suspected that adults with FASD face more health issues than the general population, but research was lacking—mainly because adults were hard to find. In 2016, the ALC launched a 260-question health survey for adults with diagnosed FASD, with only technical software…
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Canada FASD Conference 2025
The Canada FASD Conference is coming to Toronto, Ontario on October 21-23, 2025. This national conference on FASD brings together different people from across the country and internationally who hold valuable perspectives on FASD and prevention of FASD. The theme for Canada FASD Conference 2025 conference is Shaping the Future of FASD: From Evidence to…
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FASD Changemakers: Their Journey and Impact
Challenges and Changes: The Story of How the FASD Changmakers Came to Be and Do What They Do” Twenty years ago, two adults with FASD came together to challenge the system’s status quo. They decided to do something no one really thought people with FASD could do – change the message because if they didn’t…
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University of Minnesota – Prenatal Alcohol Exposure Web-based Brain Assessment Study
Fetal alcohol spectrum disorders (FASD) affect an estimated 2 to 5 percent of children nationwide, yet many go undiagnosed due to high assessment costs, long wait times, stigma, and limited trained providers. Few interventions exist for this population. In this presentation, Drs. Blake Gimbel and Jeffrey Wozniak—child psychologists and FASD researchers—will share details about their…
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Yes I Am: An Impactful Follow-up to “Yes I Can”
2023 marked the beginning of a hard-hitting campaign called Yes I Can. It’s aim was to provide inspiring content that highlighted the importance of strengths-based research AND lived experience. As we move into a busy Quarter Two, it’s our honor to present the follow-up to this campaign, “Yes I Am!” This new 13-week series will…