We are thrilled to report that the 9th International Research Conference on Adolescents and Adults with FASD, hosted for the first time in the United States and by FASD United, was a resounding success! Attendees were so excited to be at this research conference for the first time since 2018, following COVID-19 and its cancellation. 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, Washington, for four jam-packed days of community and collaboration.
A real highlight of the conference was the many self-advocates who participated, presented, spoke, and shared their stories. Excitingly, just over 100 self-advocates attended the conference. The ALC FASD Changemakers planned a stream entirely devoted to teens and adults with FASD, and we’d like to emphasize our appreciation of the incredibly valuable experience, expertise, and perspective that they brought to the conference. They, too, wanted to thank and recognize people in the community, and as the conference ended, they presented their Starfish awards to four passionate, unique individuals who have done extraordinary work in the FASD field.
As FASD self-advocate and Run FASD Coach Rebecca Tillou says,
“Let our words rattle the windows of change. Our words can break the stigma that engulfs FASD. We all have a voice; let’s use it for good.”
Rebecca embodies this quote, and it’s not hard to tell why she was chosen as one of the four award recipients by the ALC FASD Changemakers. The three other recipients were Dr. Brenda Knight, Dr. Christie Petrenko, and ALC FASD Changemaker Maggie May. Each was honored at the closing ceremony, and rightfully so!
As an organization dedicated to supporting and empowering people living with FASD, it was wonderful to see the outpouring of love and admiration shown towards the ALC FASD Changemakers and people living with FASD. Several music-style videos were shown, and the group let loose and danced on stage while the audience clapped; it was a beautiful moment. Prior to this, participants with FASD attended the FASD Teen and Adult Stream created by the Changemakers along with group plenary sessions and participated in activities that emphasized community and created meaningful friendships.
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. As photographer and FASD United affiliate member Kathy White eloquently expressed,
“In the past, I have attended conferences and learned a lot, but the life application was always so complicated. This conference was the perfect blend of information, collaboration, and connection with caregivers and professionals from across the globe. I came away with tangible strategies and contacts and was inspired by the ALC and the work they are doing to move the needle toward understanding and acceptance of FASD and all neurodiversities.”
Professionals in the FASD field, from researchers and clinicians to legal experts and educators, cherished the opportunity to learn from their peers and build lasting multidisciplinary partnerships for collaboration. 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, from the science of memory to health outcomes for adults with FASD. Starfish award recipient and engaged advocate Dr. Christie Petrenko says,
“I was so thrilled to hear that the International FASD Conference was returning this year. It is my favorite conference to attend as it intentionally brings together diverse stakeholders in our field. As a researcher, I gain valuable insights from these diverse perspectives that influence the research questions my team and I investigate. It also creates opportunities for us to share what we have learned from research with the people who can apply it in their lives.”
The FASD United team was honored to host the conference and present at several sessions and workshops alongside some of the most prominent luminaries in the FASD field. Attendees took part in over 30 sessions throughout the conference, covering nearly every facet of FASD, from prevention and social determinants of health to the living experience of those in the community. Sessions were attended and led by people from all walks of life across the globe.
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. 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.
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. Casidee Gonzales, Media Director and Conference Coordinator, expresses,
“This conference took hard work, drive, and passion for FASD to enact. Our teams were nonstop and we are brimming with ideas on how to improve and create a lasting impact. It was a truly wondrous thing to see people from all around the world and all kinds of backgrounds coming together.”
One thing this conference showed us is that the FASD field and the FASD community are stronger than they have ever been. We’re proud to be involved with such a dedicated group of people who are so willing to show up. From the doctors who have dedicated their careers to improving outcomes for people with FASD, to the self-advocates who collectively have stood up and found their voice, to the families and caregivers who keep going through hurdle after hurdle every day and find their way through this journey together, to the advocates whose unwavering passion has achieved record landmark policy change, the FASD community is a true force to be reckoned with.
We look forward to our next conference in March 20-23, 2025. The conference operates on a two-year cycle, and in 2025, there will be even more honed-in on FASD international research throughout the lifespan, rather than specifically on adolescents and adults like this year. Feel free to reach out to us with any questions; we hope to see you there.
Thank you to all the presenters for sharing your expertise, thank you to all the self-advocates for sharing your stories, thank you to all the volunteers, event staff, and committee members for putting on such an incredible event, and thank you to the over 550 attendees and supporters for making this conference such a success.
Recorded plenary sessions will be released as soon as possible, as well as conference presentation slides if the presenter has given permission to do so. In the meantime, listen to the powerful words of FASD ALC Changemaker Jessica Birch of Australia.