CJ Lutke is an internationally recognized FASD self-advocate, researcher, mentor, writer, speaker, and systems-change leader who has spent more than two decades helping reshape how professionals, researchers, families, and policymakers understand adults living with FASD. Diagnosed with fetal alcohol syndrome in infancy, CJ was adopted from foster care at age five along with siblings who also have FASD. Her advocacy has therefore developed from a lifetime of understanding FASD not as an abstract diagnosis, but as an everyday reality.
CJ became one of the early leaders of the International Adult Leadership Cooperative of FASD Changemakers. Through that work, she has helped advance one of the most consequential changes occurring in the FASD field: moving adults with FASD from the margins of research and professional discussion into leadership roles within them.
She has presented internationally for more than 20 years, advised research projects, served on committees addressing systems and access to justice, mentored younger adults with FASD, and written extensively about daily life with the disability.
CJ has been particularly influential in citizen-led FASD research. She co-led the Changemakers’ first Lay of the Land survey examining health and physical conditions among more than 500 adults with diagnosed FASD and led subsequent work examining quality of life. These projects helped broaden discussion of FASD beyond behavior and cognition by documenting its impact across health, daily functioning, relationships, services, and quality of life.
She is also an adoptive parent of a child with FASD, adding another dimension to her understanding of the systems families encounter.
CJ’s advocacy is grounded in the principle “Nothing About Us Without Us.” Her work has helped demonstrate that people with FASD are not simply recipients of services or subjects of research. They are experts whose knowledge is essential to changing research, policy, practice, and expectations for the next generation.