5 Reasons Why the FASD Community Needs Impact Week

In the FASD community, we continue to make great progress, yet much more work is needed.

National FASD Impact Week is coming up this September 15-17 in Washington, DC. Join us for three days of advocacy, action, collaboration, and community. Here are 5 reasons why the FASD community needs Impact Week:

1. FASD is not rare. We need more FASD-informed services.

We know that 1 in 20 Americans have FASD. That’s a child in every classroom. Yet, there are far too few diagnostic clinics and FASD-informed service providers around the country to meet the need.

We need a plan of action.

The FASD Symposium will create an action plan with goals for the FASD movement, as we review recommendations from the FASD National Task Force report titled “A Call to Action”

Families need to feel the tangible outcomes of FASD research.

We are empowering researchers to share their latest findings with a broad audience and connect directly with families and advocates through our Poster Reception

We need systems of care to be FASD-informed.

We are hosting a meeting of National Partners to address FASD, including the American Academy pf Pediatrics (AAP) and the American College of Obstetricians and Gynecologists (ACOG) and many others

We need the Military Healthcare System to be FASD-informed.

We are hosting our partners at U.S. Uniformed Services University of the Health Sciences (USUHS) Center for Health Services Research (CHSR) to collaborate on expanding diagnostic capacity and early intervention support services through the Military Healthcare System

2. FASD is misunderstood. Society should understand and appreciate what it is like to live with FASD.

There are many widespread myths and stereotypes about FASD. FASD is still often thought of as an issue only affecting children, leaving adults out of the conversation. The diverse spectrum is not widely understood, with many people familiar only with the facial features that most people with FASD do not have.

Leaders need to hear directly from families with living experience.

Families from across the country will gather on Capitol Hill to meet with lawmakers as part of Advocacy Day on the Hill

Individuals with living experience deserve to have their voices amplified.

Impact Week will feature the voices and experiences of FASD self-advocates. Join the World Premiere of the feature-length documentary film, FASD: In Pursuit of the Respect Act, which profiles some incredible self-advocates

The FASD community needs to be visible to be recognized and understood.

By bringing us together, Impact Week raises the visibility of the FASD community, especially as we advocate on Capitol Hill, collaborate with major national partners, and host our Red Shoes Gala event at the National Press Club

People with FASD deserve to be understood.

Through our meetings and activities, we will be hearing directly from individuals and families about their experiences and how we can raise awareness of aspects of FASD. For example, we need society to know about FASD across the lifespan (including adults), the full spectrum of effects, and that FASD is a whole-body condition, with impacts beyond the brain.

3. People with FASD face tremendous stigma. We need to destigmatize FASD.

Unfortunately, people with FASD are often subjected to stigma, bias, discrimination, and bullying. The stigma of not being neurotypical yet living with a non-apparent disability, along with the stigma on alcohol and substance use and the lack of understanding, can make people with FASD particularly vulnerable.

People with FASD need to be seen for their strengths and positive qualities.

Impact Week applies a strength-based lens to FASD, featuring leaders and researchers who emphasize the positive traits within the community and how individuals can thrive and succeed with the right supports

Professionals need to apply empathy and understanding when working with people with FASD.

As we discuss FASD with professionals and lawmakers throughout Impact Week, we are getting the conversation out in the open, which reduces stigma

The FASD community needs to be part of the neurodiversity community.

Our partners and collaborators are working to give FASD a seat at the table wherever neurodiversity is being addressed.

Our language matters. We need to talk about FASD is a way that reduces stigma.

Impact Week is key to putting into practice the guidance and expertise contained in our recently-published Language and Stigma Guide

4. Funding for FASD does not match its prevalence. We need adequate funding.

Despite the high prevalence of FASD, the amount of funding targeted to address FASD at the federal, state, and local levels is very small relative to the need and relative to other developmental disabilities and health conditions.

FASD needs a seat at the table where funding decisions are made.

Impact Week will make leaders in Congress aware of FASD and the need for funding and support through Advocacy Day on the Hill

Leading organizations like FASD United need greater support.

The FASD United Red Shoes Gala is FASD United’s largest fundraiser of the year. Funds raised go to support programs that aren’t funded through federal dollars, like our advocacy for meaningful legislative change.

Federal agencies need to know the importance of their funded FASD work.

Impact Week strengthens the relationships between FASD organizations and Federal agencies, including CDC and NIAAA, that are a major source of funding for FASD-related programs and research across the country

Major organizations and universities need to direct their resources towards addressing FASD.

In addition to FASD United and our affiliates, there are many large national organizations and universities that invest their considerable resources in addressing FASD. Impact Week brings representatives from these organizations together to hear from the community and recommit to their support.

5. FASD advocates and families are powerful. When we come together, we are even stronger.

Advocates for FASD, including families and self-advocates, are some of the most powerful, passionate, and dedicated people in our society, but they can’t do it alone. There is greater strength in numbers and when we join together, our collective impact is truly incredible.

Advocates need to join forces on Capitol Hill.

Join passionate FASD advocates for Hill Day on September 16 and take the opportunity to make your voice heard. Now more than ever, FASD needs your voice on Capitol Hill. Take action and be heard.

Professionals in systems of care need to hear from the FASD community.

Advocates share their personal experiences with leading experts and professionals in the FASD symposium and meetings throughout Impact Week

The FASD United Policy Center needs advocates to work together.

Advocates, families, and members of the Policy Center work together to learn best practices and practical strategies for driving legislative change.

Advocates need to draw strength from each other.

Impact Week is a great opportunity for advocates to meet families and self-advocates, connect with future collaborators, and build relationships with leaders in the FASD field

We hope you will join us in Washington, DC from September 15 to 17, 2025 and take the opportunity to use your voice to give FASD a seat at the table. Join us as we gather together as one vibrant community to meet the needs of individuals with FASD.