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CJ Lutke, who is 40 years old, was diagnosed with fetal alcohol syndrome when she was a baby. She was adopted when she was five, along with an older brother and sister who also have FASD and has dealt with most of the usual consequences of FAS. She is a founding member of the International Adult Leadership Collaborative (ALC) of FASD Changemakers, a group of 16 adults from seven countries who work together to change outdated perceptions about FASD, and guides much of its work. CJ is a well-known speaker on FASD, having presented widely and internationally at, and participated in, many conferences, seminars, training sessions and other events for many years, sharing her experiences and what she has learned living with FASD. She writes all of the presentation work done by the ALC team.  She sits on numerous advisory committees for university research projects on FASD, has taught medical students, and sat on a committee chaired by the Chief Justice of the Supreme Court of British Columbia to begin to reform the family justice system, is currently on its new Community of Action for Children and Youth. She was involved as one of the trainers in 3-year mentoring program for FASD in Ontario, to develop trained mentors who have FASD.  She is the author of an on-line blog that is hosted by NOFASD Australia and followed globally and does media work. CJ also provides on-line mentoring to young adults with FASD. In 2016-2017, she was co-lead of a ground-breaking Changemakers study on the health and physical issues of 500 adults with diagnosed FASD that has received wide international attention and was published in 2020. She is the lead of the Changemakers’ second survey on the Quality of Life for 461 teens and adults with FASD, which will be published in May 2024. She is also the adoptive parent of a 11-year-old son with FASD who came from the foster care system at age four. CJ believes those with FASD must take charge of changing the future, challenging perceptions about possibilities and outcomes. Her goal is to help others with FASD find their voice and to help society understand that we are greater when we are united and work together.

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Jan Lutke was the co-chair of the former National Advisory Committee on FASD to Health Canada, Government of Canada, for five years, appointed by the Federal Minister of Health, and chaired its sub-committee on Quality of Life.  She has been a member of many additional provincial and national advisory committees with respect to FASD and was invited to present at the inaugural WHO invitation only Forum on Alcohol, Drugs and Addictive Behaviours in 2019 and attended as an invited FASD expert in 2021.  She was the Clinical Research Manager for the Canada FASD Research Network (CanFASD) for ten years until her ‘official’ retirement.  She developed, guided, and chaired the annual international FASD research and adult conferences held in Vancouver for the last 34 years and developed and manages the FASD Changemakers and their work.  Jan Lutke chaired the 9th International Research Conference on Adolescents and Adults with FASD held on April 11-15, 2024, in Seattle, WA. She is a published author on many papers, including the Canadian FASD Diagnostic Guidelines, and book chapters for the University of Washington and University of Alaska Presses, and has written much material on FASD that is widely used.  She and her late husband adopted 22 children from foster care, 16 of whom have a diagnosis of FASD and now range in age from 32 to 50.