Welcome to FASD Family Life, the podcast for families by families where we get real about raising children and youth with Fetal Alcohol Spectrum Disorder. I’m your host, Robbie Seale, FASD Educator, advocate and mom of four children with FASD. I know the struggle is real, but so is success.
I am grateful to be spending this time with you! Please join me with a hot cup of coffee, or two, as we learn about adulting with FASD from two extraordinary women, CJ Lutke and Kat Griffin of the Adult Leadership Committee of the FASD Change Makers.
FASD Changemakers
The Adult Leadership Committee (ALC) of FASD Changemakers is a renowned group of citizen researchers and experts who each have diagnosed FASD. It is made up of CJ Lutke, Myles Himmelreich, Katrina Griffin, Justin Mitchell, Anique Lutke and Emily Hargrove, a group who have experienced all the events commonly associated with FASD but have learned how to overcome obstacles, maximize potential and re-define success. They use their combined lived experience to work together as consultants, advisors, trainers, presenters, mentors, group moderators, bloggers, and as various university research project team members. As well, they develop and lead their own survey research, which has received wide attention from researchers, institutions, agencies, organizations, and government and is currently being used to help focus research directions and questions.
This is the group that also organized and ran the annual 3 day international conference for teens and adults with FASD in British Columbia for 15 years as part of the larger 4 day international FASD research conferences until the university closed the department handling all this last fall after 2 years of covid restrictions.
CJ Lutke, who is 38, was diagnosed with full FAS as an infant and adopted by her foster family at age five, along with an older brother and sister who also have FASD. She is a well-known speaker on FASD, having presented at and participated in many conferences, seminars, training sessions and other events over 20 years. CJ actively provides advice and consultation and participates both as an advisor to and working member on research projects. She has just been appointed to a high-level Access to Justice Committee chaired by the Chief Justice of the Supreme Court of British Columbia. She is the author of an on-line blog that is hosted by NOFASD Australia and followed globally. As well, CJ has been a member of the Adult Leadership Committee (ALC) of FASD Changemakers for 15 years. She was the co-lead on their first ground-breaking Lay of the Land Survey on the health and physical issues of over 500 adults with FASD that has received wide international attention and was published in 2020. CJ is currently the lead author on their second Lay of the Land Survey on the Quality of Life of 468 Adults with FASD, preliminary results which were released in March of 2021 and has been widely presented including to the ICCFASD Executive Committee of NIAAA and will be presented again at their global open meeting in April of 2022. CJ believes that those with FASD must challenge perceptions about possibilities and outcomes and change the future. Her goal is to help others with FASD find their voice and to understand that we are greater when we work together.
Katrina (Kat) Griffin, who is 32, was diagnosed with full FAS in infancy and raised in foster care. She is a well-known speaker on FASD, having presented at many conferences, seminars and events over the past 10 years. She was also part of a team of teens and adults with FASD providing training on FASD for second year medical students at the University of British Columbia for over 10 years and will be joining that team again this summer. She also acts as an advisor to and working member on research proje