The FASD community came out in force for the 9th International Research Conference on FASD, hosted by FASD United this past March in Seattle, Washington. Attendees, including leading international experts on FASD, researchers/scientists, dedicated clinicians, advocates, families, and self-advocates, reflected on their experiences. We’d like to share some of these reflections, many of which were shared in a post-conference evaluation survey.
For more resources, a wealth of materials from the conference is available on our website, including the official syllabus, photos, videos of plenary sessions, and slides.
Building Lasting Connections
Throughout the four-day conference, the feeling of connection and community gave attendees a renewed sense of purpose and inspiration. A mental health professional spoke of his love for “connecting with so many incredible professionals and seeing how much everyone is putting into supporting those with FASD.”
The feeling of connection and camaraderie was palpable throughout the event, which brought people together from across the FASD field and the FASD community to Seattle, in a time where the sharing of knowledge was more critical than ever. A clinician says, “It was great re-connecting with colleagues and being able to talk to people about their latest research.” A clinician points out that having “so many divergent perspectives each enrich the others” and that it’s great to “connect with others who are dedicated to this field.”
Many attendees singled out the poster networking social as a highlight, with a researcher remarking, “This session gives researchers and their trainees to network with folks in and out of their immediate research environment. I think it is particularly beneficial for the trainees.” We heard from an FASD specialist that, “Networking is always valuable! Being able to speak with those doing research has many benefits. Learning how to participate in future research is also beneficial.”
The Power of Scientific Research
Experts shared their latest research findings on everything from new intervention tools and the impact of policy change to FASD and mental health, along with the latest scientific biomedical research. A neuropsychologist says, “Listening to the new research on FASD was extremely helpful” while an educator says, “I appreciated the vast topics that were covered in the many sessions provided. These conferences continue to build my overall understanding of FASD and its many unique complexities.”
Many researchers were delighted to share their latest scientific findings with peers, as well as advocates and families, who gained such valuable insight into emerging research. According to a clinician, “I was not previously very knowledgeable with this population, so the research is very informative.” A speech and language pathologist says the conference “gave me so much more energy to move on in my research” and that “the conference was incredible and absolutely life changing.”
Nothing About Us Without Us: Centering Self-advocates
A real highlight of the conference was the strong participation of many self-advocates, individuals with FASD, who presented, spoke, and shared their stories. FASD United extends our deepest appreciation to these advocates for their incredibly valuable experience, expertise, and perspective that they brought to the conference.
One researcher appreciates “the chance to meet and chat with FASD individuals, which places my basic science work into a big picture perspective. It is inspiring and the main reason I attend the meeting. Another scientist says, “It is always enjoyable to see the scientists collaborating and engaging with those who have lived experience or their families.”
We heard from families, caregivers, and others with a personal connection to FASD that they felt seen, supported, and encouraged by the community and by the many impactful presentations and sessions. One family member told us, “The conference helped me as a parent to be more mindful.”
Reflecting on hearing from the self-advocates in attendance, one FASD specialist says, “It takes great courage to put yourself out there, and it is important for researchers and professionals to see the humanity in the people that their research impacts.” One clinician spoke of “loving the inclusion of folks with lived experience” while a mental health professional says it is “so wonderful to hear from individuals with FASD.” One researcher summed it up well, stating, “Thank you so much for centering living experience!”
We Can Destigmatize FASD!
The conference kicked off with a pre-conference session focused on stigma, featuring individuals with living experience discussing how we can all take meaningful action to help destigmatize FASD.
A researcher expressed being deeply moved by this session, as it “gave me insight into a very sensitive topic, giving lived experiences and voices to all with lived experiences of FASD.” A student says, “I loved the stigma conversations and the speakers with living experience. I learned so much from all of them and their perspectives. I want to do more work in this area to help bring their visions of a more understanding world into a reality.”
As a result of the conference, one physician says he “will look at stigma with a different lens that is more humanizing.” A student remarked that, “Hearing from such a variety of backgrounds and synthesizing all of our experiences into potential solutions to destigmatize FASD was amazing to participate in and witness.”
“I thought it was valuable to hear the individuals with FASD speak about their experience of stigma prior to entering into the group discussions,” according to a clinical psychologist who attended. A family member says, “Hearing ideas coming from individuals living with FASD for how to decrease stigma was very informative and helpful.” Reflecting on the ultimate impact of this session, an FASD specialist believes that “it hopefully will lead to tangible change.”
The Role of Fathers: Paternal Alcohol and FASD
A standout session for many attendees was the plenary on the role of fathers, challenging some long held assumptions in the FASD field. The session from Dr. Michael C. Golding, Ph.D. on “Paternal drinking and the epigenetic influences on mitochondrial function, child health, and FASD” was called by one professor, “a truly excellent presentation and groundbreaking for FASD.” One clinician says, “This was a very interesting session with lots of new information for us to absorb” while another clinician says, “This was a phenomenal and well-laid out presentation; I learned so much!”
A child welfare professional learned a great deal, calling it “one of the best presentations of the conference. I really enjoyed it. Michael is a good presenter and was easy to listen to.” A researcher says, “The scientific advancements confirming the impact of paternal alcohol use on the developing fetus show that it is time to change the public health messaging.”
A nurse practitioner calls Michael an “excellent speaker, who really hit the perfect balance of detailed scientific information with practical and accessible language for a range of listeners.” A researcher says, “This was one of the best talks of the conference. I was blown away by the strength of the evidence of paternal effects.”
International Flair: Experts Come Together from Around the World
Experts and organizations from all over the world took the conference as an opportunity to showcase their incredible work. A researcher says, “In my organization, it has given me incredible insight and understanding of what other researchers and countries are doing in FASD research. It was inspiring and also gave me a lot to think about and how to practically apply what I have learnt in our context.” Another researcher is grateful for the experience, saying, “It has given me international presenting experience, which I really appreciate.”
A researcher loved the conversations with people from different types of backgrounds, saying, “It was so informative and eye opening. Thanks for making us meet so many people!” while another adds that it is, “Great to be able to dialogue with international colleagues.”
A presentation highlighting the FASD landscape in the countries of Poland, Mexico, and Kenya was “a very eye-opening session” according to a clinician. “We often complain about the situation in Canada and the US. However, it is apparent that many other countries are very far behind us in terms of FASD. We need to find ways to help them out!” A researcher says, “It is important to welcome and make space for those international guests trying to make a difference in their home countries” while another says, “It was good to hear from other countries to provide their perspective of where FASD is at in the world.”
CIFASD Researchers Take the Spotlight
Once again, the conference was an opportunity to hear the latest research directly from experts with the Collaborative Initiative on FASD (CIFASD), which featured many of its researchers across a two-part session. A clinician says, “This was a great session! I really enjoy hearing about the latest research!” while another clinician says, “The researchers did an absolutely amazing job explaining such high-level complex research information in a very digestible manner that was accessible for a wide variety of audiences.”
An FASD specialist praises the quality of the materials presented, saying, “This was a great set of research presentations. I was happy to be present and hear the research connected to the zebra fish and cardiac outcomes, showing alcohol is clearly the teratogen.”
“It is always interesting to hear the high-level research that is being done,” says one clinician. Another clinician calls it an “excellent session regarding the latest research” while an FASD specialist says, “It is wonderful to see the emerging tools!” A researcher calls the presentation, “very good, very clear presentations. The science is excellent and is just what I want from this conference.”
One nursing provider spoke particularly highly of the session on “Modifiable lifestyle factors to support neurodevelopment in individuals with FASD” presented by Dr. Blake A. Gimbel and Dr. Jeffrey R. Wozniak. “I loved how the speakers took the scientific evidence and translated it into practical applications. Blake and Jeff are great speakers and share important work!” remarked this provider.
A Field Comes Together: The Spirit of Collaboration
Researchers, families, advocates, and clinicians came together in a shared space, forming new connections and strengthening bonds of collaboration. “The balance of living experience and new research is so helpful in energizing me in the work I do in this field,” says one mental health professional.
Sessions were attended and led by people from all walks of life across the globe. An educator says, “As a result of this conference, I now have significant contacts whom I can pull on to seek out additional information and collaboration.” An FASD specialist says how wonderful it is to “hear from the voices of lived experiences and how community and the world can work collaboratively, sharing best practices.”
Sustaining Lasting Impact Beyond the Conference
The vast knowledge and experience that was shared throughout the weekend will continue to make a real impact far beyond the conference walls. Professionals and families learned from each other, opening conversations and building bridges. A researcher says, “During the networking and the stigma session, I felt I was part of something larger, that I was making a difference.” A caregiver says, “I loved hearing about things I can take home and implement and use to advocate for specifics.”
We have no doubt that the knowledge exchange and dialogue throughout the conference are making a real difference. Many fields, including education, child welfare, and criminal justice, will be incrementally more FASD-informed as a direct result of the conference. A support service provider says, “I get to bring what I learned home and share with my community.” A clinician says “I connected with several people who I will continue to communicate with over the next year!”
According to a child welfare professional, “I gathered a lot of learning that will inform design of my FASD interventions.” A clinician adds that, “The conference offered validation that re-energized me, and it helped keep me informed of developments in the field. I have new recommendations to incorporate into my reports and new connections that can help support my clients after I diagnose FASDs.”
“The research I heard about will impact our clinical and community practice,” says a clinician. “I often feel isolated working in community away from anyone engaged in the same work. But at the conference I had a chance to engage with others on some of the issues.”
One educator now feels “better equipped to refer patients and colleagues to programs and studies.” An FASD specialist says, “I feel incredibly inspired to bring back new thoughts and information to my clinic and integrate them into our practice with our families and children with FASD.”
A mental health professional expressed a deep appreciation, saying, “This is one of the best conferences I have attended. The sessions were all very interesting and I appreciated the diversity of topics, so many of which were applicable to all types of attendees. The plenaries were very high quality.”
We have so much more work to do to achieve our vision of an FASD-informed world, and we feel so inspired by the many ways, large and small, that the conference moves us all a step closer to realizing this vision. “Thank you for these amazing lessons, it has been life changing,” says one student and trainee.
A Huge THANK YOU as We Look Forward to Next Year
The FASD United team is so deeply honored to serve as the host of the conference. Thank you to all the presenters, event staff, volunteers, and committee members. We would like to also highlight that the conference would’ve not been possible without our sponsors: The Foundation for Alcohol Research, National Institute on Alcohol Abuse and Alcoholism (NIAAA), Seattle Children’s, Kate Boyce Reeder as well as some anonymous donors.
Thank you to all the self-advocates for sharing your stories, and thank you to each and every attendee and supporter for making this conference such a success.
We are looking forward to seeing many of you at our next FASD conference that will be focused on adolescents and adults, the 10th International Conference on Adolescents and Adults with FASD to be taking place April 17-20, 2026 at the Hyatt Regency, Seattle, WA. Call for abstracts will be released later this summer. In the meantime, feel free to contact Jo Votolato, conference director, votolato@fasdunited.org with any questions; we hope to see you there.