Meet the ALC FASD Changemaker
Australia 
Jessica Birch 
Jessica is a National advocate and speaker living on the East Coast of Australia.
Since her late diagnosis at the age of 33, she has turned her attention to awareness building and education to create a better understanding of the prevalence and consequences of prenatal alcohol exposure in Australia.
Jessica shares her lived expertise in an effort to arm individuals, parents/carers, educators and health professionals with the information they need to create successful interventions and support; She believes awareness and action is key to minimising the rate of prenatal alcohol exposure globally and works closely with organisations, stakeholders and government on alcohol policy and regulatory reform.
In just a few short years, Jessica has been involved in a number of projects and health promotions, and has appeared in a variety of webinars, podcast, radio and television interviews; Notably, she successfully campaigned alongside Australia’s peak bodies for clear pregnancy warning labels on all alcohol products within Australia and New Zealand, and presented to Parliament house for the Launch of RSR Australia. Moreover, Jessica was the first individual living with FASD to speak at Australia’s National Brain Injury Conference and presents annually for a Postgraduate Certificate in The Assessment and Diagnosis of FASD at the University of Western Australia. Jessica is regularly consulting with researchers, health professionals and decision makers sitting on several expert and community advisory boards, including those for NOFASD, FASD HUB, University of QLD and the Department of Justice and Community Safety.
She currently holds a role as a Lived Experience Advisor for the Foundation For Alcohol Research and Education.
Jacob Dedman
Jacob Dedman, is the youngest member of the ALC at 19. He was born in and lives in Australia, was diagnosed with FASD when he was 12. He started taking photographs when he was 10 and has since become an award-winning photographer. He says “there’s something about photography I just love. It’s the peacefulness of nature. The attention to detail it requires. How you can take the most abstract and strange setting and turn it into a beautiful capture of time”. He wants to raise awareness of the importance of land and wildlife conservation and for his images to be a reminder of what you can go out in nature to see, not what used to be in the past. That is his goal for FASD, too.
Canada
Shannon Butt
Shannon was finally diagnosed with FASD at age 33. She had spent a lifetime slipping through the cracks of the healthcare system, receiving several incorrect labels along the line. After her diagnosis, she finally received the support she needed for living with FASD. She believes in using her story as a way of sharing perspective, and has shared hers to empower others to discover, and perhaps speak, their own. Shannon is an artist and certified yoga instructor and self-proclaimed forever student. She views her own life as a series of lessons. Using her living experience with FASD as the lens through which she views the world, Shannon creates space where people feel welcome and free to be their selves.
Katrina (Kat) Griffin
Katrina Griffin, who is 35, 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.
Myles Himmelreich
Myles Himmelreich, who is 45, 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 is 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. 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.
Anique Lutke
Anique Lutke, who is 35, was diagnosed with FASD at 11. She grew up in birth and foster homes and was adopted at 14. She spent time teaching second year medical students as a teenager. She has been a member of the ALC of FASD Changemakers for five years and has actively participated in their second Lay of the Land survey. As well, she has spoken at several conferences and is participating as an advisor to a FASD research project. Anique’s goal is to help those with FASD who have experienced trauma become the whole people that they are.
CJ Lutke
CJ Lutke, who is 40, 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 Adult Leadership Committee (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 is the lead author on their second Lay of the Land Survey on the Quality of Life of Adults with FASD, preliminary results which were released in March of 2021 to wide attention and is currently being written for publication. CJ is the adoptive mother of a 10-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 Mitchell
Justin Mitchell, who is 41, was diagnosed with full FAS at 20. He was raised in multiple foster homes, group homes and has been homeless for long periods of time. He has a lengthy criminal record. As an adult, he reconnected with his birth mother who had been sober for some time. Justin originally connected with the ALC of FASD Changemakers when he was in active addiction. His involvement, inclusion and welcome to the FASD conferences in Vancouver over several years became a reason for sobriety. He has been a member of the ALC for 7 years and provides much expertise on areas where little is known that comes directly from those with FASD who have had the most difficult lives. The questions posed in the second Lay of the Land survey in some areas come directly from Justin. He has also become an eloquent and poignant speaker, delivering topic specific keynotes in the areas of homelessness, addiction, criminal justice, and parenting. He has just been appointed to a small “lived expertise” advisory committee to a university research project on criminal justice looking at diagnosis, support and prison issues. Justin’s goal is to help those from the most difficult backgrounds find their way, know who they are and discover themselves as whole people, to “fail their way to success”.
Ireland 
Maggie May
Maggie May, who is 27 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 3 years. She works FASD Awareness. She is an expert advisory committee member for the development of a health app for adults with FASD by the University of Rochester, USA. 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.
Netherlands 
Kim Doktor
Kim is 23 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; to help them find the right people and supports; 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”.
Nury van Beers
Nury van Beers is 37 years old and was finally diagnosed with FASD at the age of 32. She was born in Bogota, Colombia, was adopted at the age of four, and moved to the Netherlands, where she grew up and currently lives. Her life has been marked by a series of struggles, including growing up in a dysfunctional home, difficulties in school, and experiences of sexual and emotional abuse. She battled addiction to alcohol and drugs for many years and went through rehab multiple times.
Nury’s life took a positive turn during her final rehab when she met her husband, an individual with autism and ADHD. For the first time, she found someone who understood that she was different, not broken. Her anger dissipated when she became the mother of a healthy baby girl after a drug and alcohol-free pregnancy. She recently became a mother again, welcoming her second daughter into the world. Additionally, she reconnected with her birth mother and had the opportunity to meet her.
Nury has authored a book about her experiences living with FASD, motherhood, and Complex Post-Traumatic Stress Disorder (CPTSD), as well as her ongoing journey of recovery, which, she emphasizes, never truly ends. Her sadness disappeared when she became a self-advocate for FASD in the Netherlands. She serves as an advisor to an organization for FASD in the Netherlands, has been published in several magazines, maintains a blog, and continues to collaborate with healthcare professionals in the Netherlands to raise awareness for FASD. Her primary goal is to build bridges so that we can all engage in compassionate conversations about FASD, without judgment, stigma, or generalization. Nury draws upon her personal experiences and wisdom and is grateful for the opportunity to do so.
New Zealand 
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 10 years, has two young children (and a baby due soon). 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 is assisting with getting a group of people with FASD from all over New Zealand connected through social activities.
Norway 
Tonje Hognerud
Tonje Hognerud, who is 39 years old, was diagnosed with full FAS as an infant. She was born 3 months prematurely, weighing less than 2 lbs and was hospitalized for many months. Tonje has lived her entire life in Norway and grew up in foster care and then with her birth father. She is a single mother of twin boys and is a kindergarten teacher part-time. She finally got her driver’s license six months ago – the hardest thing she has ever done. Tonje’s goal is to improve knowledge about FASD, especially in her country, and to help to make better lives for those with FASD.
United States 
Emily Travis Hargrove
Emily Hargrove, 33, 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 a two-year-old son and expecting another child in 2024. She lives in Kentucky and is involved in full-time ministry 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 seven 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. 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. You can learn more about her work at www.emilyhargrovefasdcounselingandconsulting.com.
Gina Schumaker
Gina is 58 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.
Justin Shepherd
Justin Shepherd is 41 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 recently completed The FASD Project film with Make It Better Productions, a accompany he set up to do FASD film work. Justin is the newest member of the ALC. 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.
ALC FASD Changemakers 