Research led by living experience
Research shaped with us, not only about us
ALC FASD Changemakers are authors, community researchers, co-designers, and advisors. Our work brings the knowledge of adults with FASD into research that can improve understanding, health, services, and everyday life.
Featured publications
These publications include Changemakers as authors and research partners. Each summary below is written in plain language.
Peer-reviewed article · 2024
FASD: The Living Experience of People with Fetal Alcohol Spectrum Disorder
Full citation: Hargrove, E., Lutke, C. J., Griffin, K., Himmelreich, M., Mitchell, J., Lutke, A., & Choate, P. (2024). FASD: The living experience of people with fetal alcohol spectrum disorder—Results of an anonymous survey. Disabilities, 4(2), 332–347. https://doi.org/10.3390/disabilities4020022
Summary: This anonymous survey, designed by adults with FASD, examined childhood adversity, education, employment, housing and finances, justice-system involvement, relationships, and parenting. The findings describe persistent structural and interpersonal barriers—including stigma, economic instability, employment difficulties, and vulnerability to manipulation—and offer directions for more responsive support.
Scholarly book chapter · 2020
The Lay of the Land: FASD as a Whole-Body Diagnosis
Full citation: Himmelreich, M., Lutke, C. J., & Hargrove, E. T. (2020). The lay of the land: Fetal alcohol spectrum disorder (FASD) as a whole-body diagnosis. In A. L. Begun & M. M. Murray (Eds.), The Routledge handbook of social work and addictive behaviors (pp. 191–215). Routledge. https://doi.org/10.4324/9780429203121-14
Summary: Drawing on a community health survey developed by three adults with FASD, this chapter documents a wide range of physical health concerns reported by adults with FASD. It argues for recognizing FASD as a whole-body condition and for research and healthcare that take adult health and lived experience seriously.
Peer-reviewed article · 2024
My Health Coach: Community Members’ Perspectives on a Mobile Health Tool
Full citation: Speybroeck, E. L., Petrenko, C., Tapparello, C., Griffin, K., Hargrove, E., Himmelreich, M., Lutke, A., Lutke, C. J., May, M., Zhang, S., Looney, J., Kautz-Turnbull, C., & Rockhold, M. N. (2024). My Health Coach: Community members’ perspectives on a mobile health tool for adults with fetal alcohol spectrum disorders. Digital Health, 10, 20552076241261458. https://doi.org/10.1177/20552076241261458
Summary: ALC members co-led focus groups and survey work with 26 adults with FASD to evaluate a prototype mobile health app. Participants responded positively and identified features that could strengthen autonomy, competence, and connection. The study shows how community-engaged design can make health technology more relevant and accessible.
Peer-reviewed article · 2025
Feasibility Trial of the My Health Coach App
Full citation: Speybroeck, E. L., Petrenko, C., Tapparello, C., Romanos, C., Griffin, K., Hargrove, E., Himmelreich, M., Lutke, A., Lutke, C. J., May, M., Kautz-Turnbull, C., Rockhold, M. N., & Myers, J. (2025). Feasibility trial of the My Health Coach app for adults with fetal alcohol spectrum disorders. Research in Developmental Disabilities, 164, 105053. https://doi.org/10.1016/j.ridd.2025.105053
Summary: This six-week trial examined whether My Health Coach and a future larger study were practical and acceptable. Of 95 adults screened, 43 were eligible. The app and study procedures were generally workable and acceptable, while the research identified refinements needed before a randomized trial. ALC members contributed to the app’s concepts, resources, and interpretation.
How we contribute
Lived-experience leadership
Research questions and priorities are stronger when adults with FASD help lead them.
Community partnership
We collaborate with researchers while keeping adult voices central throughout the work.
Useful knowledge
We help turn findings into knowledge that people with FASD, families, and professionals can use.
Interested in collaborating?
We welcome thoughtful opportunities to contribute to research, advisory work, conference sessions, and knowledge sharing.