CJ Lutke
CJ Lutke, who is 42, 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 is a systems changer and advocate, provides advice and consultation and participates as an advisor and team member for different research projects. She sits on various committees, provides mentoring to younger adults with FASD and is the author of an on‑line blog that is hosted by NOFASD Australia which is followed globally. As well, CJ has been a member of the ALC of FASD Changemakers for 15 year and was one of its founders. She was the co‑lead on their first ground‑breaking Lay of the Land Survey on the health and physical issues of adults with FASD that has received wide international attention and was published in 2020. CJ was the lead author on their second Lay of the Land Survey on the Quality of Life of Adults with FASD, which was published in 2024 and is a team member on their third Lay of the Land Survey on the Use of Funded Services and Unfunded Supports by Adults with FASD which is currently underway. CJ is the adoptive mother of a 12‑year‑old son who also has FASD. CJ believes that those with FASD must challenge perceptions about possibilities and outcomes, find their purpose 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.
Justin Shepherd
Justin Shepherd is 45 years old and was diagnosed with FASD at the age of 40. He has BFA in Performing Arts with concentrations in Writing, Directing, Acting and Set design and has performed as a stand‑up comedian for 20 years. In addition to a British Arts Tour, Justin has worked crew in sound and lighting, been a voice over actor for commercials, video games and narration, and has made guest appearances on shows on Showtime, Netflix, ABC, CBS, History Channel, Lifetime as well as made feature film appearances. Justin is the Creator and Director of TV pilot Stiffed, the Creator and Owner of ViniVidi Productions and the Co‑creator/co‑owner of Reel Creators Production Company. He completed The FASD Project film with Make It Better Productions, a accompany he set up to do FASD film work. Justin has been a member of the ALC and is part of their third Lay of the Land Survey on the Use of Funded Services and Unfunded Supports by Adults with FASD which is currently underway. His goal is to use the power of film and digital content media to help raise awareness around humanitarian, civil rights, public health and social justice issues with respect, legitimacy, scientific accuracy and compassion.
Maggie May
Maggie May, who is 29 years old, was diagnosed at the age of five with FAS in foster care. She was born in and has lived her entire life in Ireland. She is a well‑known speaker on FASD, moderates several on‑line groups including the largest global online support group for teens and adults with FASD and provides online mentoring to teens with FASD in several countries. Maggie has been a member of the ALC for 6 years. She works for FASD Awareness in he UK. She is an expert advisory committee member for the development of a health app for adults with FASD by the University of Rochester, USA and is the lead on their third Lay of the Land Survey on the Use of Funded Services and Unfunded Supports by Adults with FASD which is currently underway. Maggie’s goal is to help those with FASD to find their own voices, and the courage to be who they are and achieve what they want to do.
Byron Jones
Byron was adopted from Guatemala and spent his early years living in the UK. At the age of 7 he moved with his family to New Zealand and has lived in Wellington since then. He has worked as a chef in a variety of restaurants and loves preparing food. He has a partner of 12 years, and has three young children. He lives by the sea and loves diving, working out in the gym (when he has time) and doing sports and outdoor activities with his children. He is passionate about helping others with FASD and administers a Facebook group for people living with FASD in Aotearoa New Zealand. He leads a group of people with FASD from all over New Zealand connected through social activities. He also co-leads Titoki, (the FASD leadership Development Program for teens and adults with FASD in NZ) in leadership, peer support and advocacy
Kim Doktor
Kim is 25 years old and was diagnosed with FAS when she was 21. She was raised by her birth mother until her death when Kim was 14, after which she lived with her father and brother until she was removed by social services. She lived in foster care, then an independent living program and then moved to a home for adults who need more support where she now lives. Kim has always been “a little different” and struggles with many health issues. She believes that her diagnosis was a good explanation for all the struggles she has had, and was not a shock to her. It has allowed her to know she has not done anything wrong and helps her find peace and acceptance of her difficulties in life. Kim works two days a week at a nursing home and one day a week on a farm caring for horses. She finds structure helps with the over‑stimulation she struggles with. Kim is a highly verbal and motivated person with a goal to make a difference for those with FASD and is a member on their third Lay of the Land Survey on the Use of Funded Services and Unfunded Supports by Adults with FASD which is currently occurring. She wants to develop the knowledge and expertise in FASD that can make a difference, especially in the Netherlands. “Maybe that is a big thing to wish for, but it would be very helpful to other people in the future”.
Emily Travis Hargrove
Emily Hargrove, 34, was diagnosed with full Fetal Alcohol Syndrome (FAS) at the age of one at the Vanderbilt Children’s Hospital Center for Child Development. She grew up in an adoptive family and is now married with two children, ages 1 and 4. She lives in Kentucky with her husband, Jace. Emily holds a bachelor’s degree in psychology and counseling, a master’s in psychology, and is currently working on her PhD with a dissertation focus on Fetal Alcohol Spectrum Disorders (FASD) and spirituality. She is a certified member of the American Philosophical Practitioners Association (APPA) as a philosophical counselor. Emily has been a member of the ALC of FASD Changemakers for 10 years and was one of the co‑authors of the first Lay of the Land Survey on the Health issues of adults with FASD, published in 2020 and is a member on their third Lay of the Land Survey on the Use of Funded Services and Unfunded Supports by Adults with FASD which is currently underway. She is a former expert panel member for SAMHSA’s FASD Center for Excellence, co‑authoring treatment and intervention protocols implemented throughout the United States. Emily is also a founding member of the first national self‑advocacy network, Self‑Advocates with an FASD in Action (SAFA). Emily owns Emily Hargrove Consulting – Where Faith and FASD Collide, offering philosophical counseling, speaking and training, and a clothing and accessory line, all of which are FASD‑informed and inspired. As a member of the Adult Leadership Committee (ALC) of FASD Changemakers, Emily partners with them to strengthen the autobiographical voices of adults with an FASD in research.
Katrina (Kat) Griffin
Katrina Griffin, who is 37, 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 part of a team of teens and adults with FASD providing training for second year medical students at the University of British Columbia for over 10 years. She also acts as an advisor to research projects. Kat has been a member of the ALC of FASD Changemakers for ten years and has actively worked on their second Lay of the Land Survey on Quality of Life. Kat’s goal is to help others with FASD find their place and to participate meaningfully as members of society.
Gina Schumaker
Gina is 59 years old and was finally diagnosed with FASD at 50. She was raised in Florida but now lives in Alaska where she works as a support specialist at the University of Alaska. She is a mother and grandmother and a strong advocate for those with FASD. She is a Board member of the Alaska Center for FASD and a moderator for an on‑line support group called Flying with Broken Wings. She does speaking to raise awareness on FASD and has lobbied in the Alaskan government for more funding and travelling diagnostic teams and was part of the latest Alaska Center project on creating a movie on the “8 Keys for Adults with FASD”. Gina’s goal is to encourage and give hope to others and to be a voice for those who are unable to be their own.
Myles Himmelreich
Myles Himmelreich, who is 48, was diagnosed with FASD at 22. He grew up in an adoptive family. He is a well‑known motivational speaker on living with FASD and has presented at many conferences over the last 15 years. He also provides consultation and training to improve capacity to understand and create inclusion for those with FASD and has run mentoring groups. Myles was co‑lead on the ALC Changemakers first ground‑breaking Lay of the Land Survey on the health of adults with FASD and was a member of the team on their second Lay of the Land Survey on Quality of Life. He is a system changer and advocate, with a passion for creating meaningful inclusion for those with FASD, including in past work with the Representative for Children and Youth for the Province of British Columbia. He is now a Services Advisor to the Government of BC. His goal is to help audiences change the way they view FASD, educate society to build environments for success, and empower those with it to know and find their purpose.
Carl Young
Carl Young is a neurodiversity advocate, author, and international speaker who brings living experience and compassion-driven leadership to conversations on FASD, ADHD, autism, and trauma. A father of five—two of whom are neurodiverse—Carl, himself a neurodiverse individual diagnosed with FASD at age 52, co-authored Embracing Hope, a practical guide integrating research, policy, and real-world application. With additional books scheduled for release in the coming year, including one designed for ministry teams, Carl is a frequent presenter at regional and international conferences. His work is grounded in a simple mission: to broaden empathy, reduce stigma, and help people thrive through understanding.