Last week, FASD United proudly hosted FASD Impact Week in Washington, DC.  Over the course of three jam-packed days (September 16, 17, and 18), advocates, researchers, and families came together to organize, strategize, learn, and celebrate.  Through workshops, a symposium, an advocacy-filled “Hill Day,” film screening, and a gala celebration, the FASD community showed up with passion and resolve to ensure that FASD gets a “seat at the table” where decisions are made that impact our community. 

A busy week kicked off on Monday morning with an engaging and productive symposium, in which leaders across many disciplines in the FASD field, including members of the FASD United Affiliate Network, worked collaboratively to brainstorm creative ways to move the field forward.  Attendees gained valuable insight as they explored opportunities for cross-collaboration and generated ideas on important topics such as diagnosis and screening and agency collaboration.  The 2009 “A Call to Action” document created by a congressionally named task force on FASD served as the jumping off point for the group to reflect on where we are as a field.  Lead author Dr. Heather Carmichael Olson joined the symposium and helped to provide context and direction for participants.  The group discussions and reports generated by this symposium are forming the foundation for an upcoming white paper developed by FASD United, which will present a summary of the discussions. 

Later that evening, our annual Red Shoes Gala at The National Press Club celebrated the FASD community and honored our champions. With over 160 supporters in attendance sporting their bright red shoes for FASD Awareness Month, including two U.S. Senators, the Gala was a beautiful and powerful reflection of the strength of the FASD community.  With red chairs atop each of the tables, a striking centerpiece brought home the urgent need to “Give FASD a seat at the table.”   Through the generosity of the community, FASD United raised over $200,000 to support work shaping policy to support people with FASD and FASD awareness. 

Watch highlights from the Red Shoes Gala on YouTube. 

Longtime FASD United champion Lisa Murkowski, Alaska Senator and co-author of the FASD Respect Act, spoke movingly about the need for public investment in the FASD community. Maine Senator Angus King received the FASD United Leadership Award and remarked that, “It’s important to recognize how important your advocacy is.  The world changes by people that are passionate, and that’s what this organization [FASD United] is all about.”  Senator King highlighted the work being done to address FASD in Maine as a model for Federal action, an effort spearheaded by our incredible board member Connie Mazelsky. 

We were honored to host a representative of Senator Amy Klobuchar, the other FASD Respect Act co-author, whose legislative assistant Cassidy Hobbes attended.  Senator Klobuchar provided comments on the Respect Act, thanking FASD United by saying to us, “You’ve been a lifeline to so many families.”   

Pioneering FASD researcher Dr. Heather Carmichael Olson, author of the Call to Action, was honored with the FASD United Excellence Award and gave impassioned remarks about the importance and value of learning all we can about FASD and how research can be put into practice to truly impact people’s lives.  “It is such an unbelievable honor to accept this award,” Dr. Olson remarked. 

The evening ended with a powerful talk by Emmy-Award winning director and producer Dan Habib, who spoke movingly about his family’s disability journey and the importance of including FASD in the conversation.  Dan told the Gala attendees, “I know all of you here want to minimize the impact and occurrence of FASD and other disabilities, but we do want to honor those who do experience it.” 

All of us at FASD United would like to give a special Thank You to all of our generous Gala sponsors and all our board members, and in particular, we would like to thank Susan Shephard Carlson and Connie Mazelsky, who really made the evening possible. 

After a night of rest, advocates from across the country gathered together on Capitol Hill for our annual “Hill Day” on Tuesday.  Family members and self-advocates made their voices heard by meeting directly with their legislators in their House and Senate offices.  Over 75 advocates had with over 50 meetings with offices across over 25 states. A mix of longtime advocates and those newer to the cause showed up and shared their deeply personal stories, along with well-honed talking points, facts and figures.  One advocate said, “It was great to talk about how far we’ve come and how much we have left to do, and we look forward to having our representative’s support.”  Legislators were often shocked to learn that FASD affects 1 in 20 Americans, and many recommitted to sponsoring the FASD Respect Act. 

The sight of so many advocates sprinting from meeting to meeting, sporting their custom “Give FASD a Seat at the Table” T-shirts was a beautiful reminder of the size and strength of the FASD movement.  Everyone was filled with a sense of purpose and a palpable sense of hope and promise of finally getting the Respect Act passed into law.  An advocate and affiliate member told us that during their meeting, staff made it clear that they would sign on to the Respect Act and work to get it passed.  After Hill Day, the FASD Respect Act now has 53 co-sponsors in the House of Representatives and 12 in the Senate and is closer than ever to passage. 

Tuesday evening featured a special pre-release film screening of The Ride Ahead, a documentary film by award-winning directors and producers Samuel and Dan Habib, who spoke at the Red Shoes Gala the night before. The film features FASD self-advocate Andrew Peterson and tells the story of Sam Habib, a 21-year-old itching to move out, start a career, and find love. Along the way, Sam connects with a community of disability activists who help him follow his dreams. A great crowd of over 70 people, along with more attending virtually, enjoyed the film and its wonderful introduction by the director and star of the film, Samuel Habib. The screening was followed by a powerful Q&A with Dan Habib and Andrew Peterson. 

Impact Week closed out on Wednesday with a series of workshops presented by FASD United partners and the Uniformed Services University of the Health Sciences (USUHS) Center for Health Services Research (CHSR).  The USUHS team gave updates on addressing FASD in the US Military Healthcare System, including through an innovative hub-and-spoke model of diagnosis in which a centralized hub provides resources and support to “spoke” locations, including clinics and bases.  USUHS summarized the results of their recent needs assessment and provider feedback (with respondents from 55 military hospitals), which shows an immense opportunity to improve provider’s knowledge of FASD and how to serve affected patients.  

The workshop featured an interactive working session on family supports and interventions for people with FASD.  Attendees broke out into small groups to explore issues such as the barriers to accessing FASD services and unique considerations for military families.  Christie Petrenko, a leading FASD researcher and FASD United Board Member says, “The workshop was really engaging. I loved the focused and productive discussions at each table. The format gave everyone a “seat at the table” and created opportunities for everyone’s voice to be heard.” 

Leading FASD researcher Heather Carmichael Olson, coming off the heels of being honored at the Gala, gave a keynote presentation on her latest findings, informed by a career at the forefront of the FASD field.  Dr. Olson spoke about the need for family-centered care for individuals with FASD, and how we can tailor interventions and services that are FASD-informed and accessible to the community. 

An emotional highlight of the day was a living experience family panel moderated by Jennifer Wisdahl, FASD United Chief Operating Officer.  The panel featured Kathy White and Aubrey Page, who both shared their experiences of navigating FASD within the military and its health system.  Aubrey and Kathy talked about the challenges of a lack of recognition of FASD and a military culture that often encourages alcohol use.  Describing their own personal journeys of uncovering more and more about FASD, Kathy and Aubrey realized they had to be the ones to educate their doctors, teachers, and service providers about FASD.   

In between each of these great sessions, attendees were given ample time to connect and network with each other during the many breaks.  We know from past Impact Weeks how much value there is in the opportunity to socialize and build lasting personal and professional connections.  The structure of Impact Week gave each attendee the space to reflect on the presentations and workshops and to have meaningful conversations on how to move the field forward.  Researcher Christie Petrenko remarked that, “I loved the opportunity to connect with other engaged and passionate advocates, providers, and researchers. FASD Impact Week creates meaningful opportunities to connect with people from all different walks of life to advance this important issue.” 

The workshop closed out with a session featuring emerging researchers, highlighting the very latest findings in FASD and PSE research. The passion and drive of these up-and-coming researchers made everyone feel inspired and optimistic about the future of the FASD field.  Siara K. Rouzer described her current research on the effects of prenatal exposure to alcohol and cannabis, a very timely issue given the rapid increase in cannabis use during pregnancy and the need for more research into its impact.  Siara Rouzer, Olivia Weeks, Carson Kautz-Turnbull, and Amanda Mahnke each presented their latest findings on such topics as health interventions for FASD and the role of genetics and epigenetics in mediating the impacts of PAE. 

As FASD Impact Week came to a close, advocates and professionals began to make their way out of the conference space, often to continue to conversation at the hotel, at various sites in downtown Washington, DC, and on their way back home.  Through it all, we were delighted to see so many returning advocates and affiliate members strengthen their bonds of collaboration, while newcomers to Impact Week felt welcomed into the fold. 

We are so excited to see how the FASD community grows and expands in number and in strength as we all take home what we have learned from each other and put our newfound knowledge and experience to work in communities across the country.  We are already seeing the impact being felt by affiliate organizations, invigorated by a week of community.  Our collaborators and partners, empowered by a week of insight and discovery, are redoubling their efforts to advance the FASD field.  Advocates from across the country, inspired by hearing their own amplified voices, are more committed than ever to lifting up the FASD community through policy change.  Families living with FASD, feeling seen and valued for who they are, are moving forward with a renewed sense of purpose. 

This year’s Impact Week has truly lived up to its name, in ways large and small.  From the immediate impact of a community reawakened to its own power and strength, to the lasting impact of policy change and FASD-informed systems of care, to the personal impact of families being celebrated for the often unsung yet heroic work of raising a loved one with a disability and empowering them to know that while they struggle at times, they are strong beyond measure.   

It was striking to look out at the crowd at Impact Week and see that literally every seat at every table in the room was taken by a member of the FASD community.  By being the change we want to see in the world, FASD United is proud to bring the community together to move us all closer to our shared vision of an FASD-informed world where people with FASD are empowered and where FASD is given a seat at each and every table. 

Materials from Impact Week are now available at this link, including slide presentations, photos, and documents. 

Please be on the lookout for more content from Impact Week, including more photos and video clips, which we will be sharing in the coming days.  Please check our website and follow our social media to get all the latest news. 

We look forward to our work together and invite you to next year’s Impact Week on September 15-17, 2025. We also invite you to join us in Seattle for the International Research Conference on FASD on March 20-23, 2025.