FASD Hope is a podcast about Fetal Alcohol Spectrum Disorder (FASD), through the lens of parent advocates with over nineteen years of lived experience.
Episode 109 highlights the AMAZING advocacy and work of the Adult Leadership Committee of the FASD Changemakers. Two members of the ALC, CJ Lutke and Kat Griffin are featured in this episode.
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.
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 projects and has just been appointed to an Access to Justice Committee chaired by the Chief Justice of the Supreme Court of British Columbia. Kat has been a member of the ALC of FASD Changemakers for 10 years and actively worked on their second Lay of the Land Survey on Quality of Life. She is employed as the FASD mentor for the Asante FASD Diagnostic Centre in British Columbia. Kat’s goal is to help others with FASD find their place and to participate meaningfully as members of society.
In this AWESOME episode, CJ and Kat share: their journeys with FASD, how the ALC of the FASD Changemakers formed, the extensive work of the ALC / FASD Changemakers, their EDUCATIONAL and ELOQUENT response to the infamous and ableist SNL Skit and their hopes for individuals with FASD. #craftthedraft
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