Introducing 9 Days, 9 Ways to make an Impact this FASD Awareness Month. Starting tomorrow.
Maybe you love someone with FASD. You have fought for a diagnosis, hunted for a therapist who has even heard of it, begged schools to understand a brain that processes the world differently, and stayed up at night wondering what happens to your child when you are no longer there to advocate for them.
Or maybe you are the person with FASD. You have lived the diagnosis, or the years without one, navigated schools and workplaces and systems that were never built with your brain in mind, and figured out, on your own, how to advocate for yourself. Either way, you did not choose this fight, but here you are. And you deserve to know why the systems that should be serving you are not.
The answer is funding, and the solution is your voice in the halls of Congress.
Fetal alcohol spectrum disorders are among the most common developmental disabilities in the United States, affecting an estimated 1 in 20 school-age children, and untold numbers of adults who grew up without ever getting a name for what they were experiencing. In a real victory for this community, Congress passed the FASD Respect Act, authorizing research, State and Tribal systems to build real diagnostic capacity, and workforce training for the professionals who work with people with FASD every day. That authorization is the law of the land right now. But authorization is not funding.
Congress agreed that people with FASD are entitled to these programs, and then it did not appropriate the money to run them. Research remains underfunded. Provider training is nearly nonexistent. Diagnostic infrastructure is scarce. Support systems for people living with FASD across their lifespan are patchwork at best. Not because the law does not exist. Because Congress has not yet funded the law it already passed.
That is where you come in.
You have three federal legislators: two United States senators and one representative in the House. Each of them controls something important: a vote on the federal budget and a voice in deciding what this country chooses to prioritize. They are not experts in FASD. Most of them have never heard a parent describe what it is like to watch a child cycle through crisis after crisis while the healthcare system looks the other way, and most of them have certainly never heard directly from an adult with FASD about what it takes to build a life inside systems that were not designed for them. But they listen to their constituents, and they listen to the people who show up.
When you walk into a congressional office and tell your story, whether it is your child’s story or your own, you are not there to ask for charity, and you are not there to ask for something new. You are there to ask Congress to fund a law it already passed. You are a voter and a constituent. You are the human face of a public health crisis that federal policy has acknowledged but not yet resourced, and you are there to hold your government accountable to the people it is supposed to serve. If you are an adult with FASD, you bring something no parent, no clinician, and no advocate can fully replicate: firsthand testimony about what the system actually does to the people moving through it, and about what you were promised that you still have not received. That perspective carries its own authority, and legislators need to hear it directly from you, not only about you.
Tell them what people with FASD are entitled to under the law and ask them to fund it.
People with FASD are entitled to research that builds real understanding of how prenatal alcohol exposure affects the brain across a lifetime. They are entitled to timely, accurate diagnosis. And they are entitled to be understood by the doctors, teachers, and judges who make decisions about their lives, which means funding the training the law authorizes, not waiting on good intentions alone. Congress has shown this is what it intends to do and what it are authorized to do. Now, they simply need to provide the funding to allow it to happen.
You may feel like one person walking into a powerful institution with little to offer. That feeling makes sense, but it’s not true. Congressional offices track constituent contacts, and they notice more than you would think. When a parent sits down and shares their story, or an adult with FASD speaks from living experience, that conversation carries something no lobbyist or press release ever could.
You know what this looks like, whether from raising a child or from living it yourself. You have held it, lived inside it, stayed up with it at 2 a.m. That kind of knowledge is not a small thing. It is exactly what your legislators need to hear, and exactly what they cannot get anywhere else.
A law without funding is not real change.
The FASD Respect Act will not solve everything, even fully funded. But without funding, a law on the books stays a law on paper only. Without appropriations for research, people with FASD are still waiting for answers Congress already agreed they deserve. Without appropriations for State and Tribal diagnostic capacity and provider training, people with FASD keep ending up in front of doctors, teachers, and judges who mean well but do not understand the person in front of them, and the burden of closing that gap falls on people with FASD and their families. And without appropriations for services, the promise Congress already made goes unmet for the people who were told help was coming.
The path to change runs through Congress, specifically through the appropriations process that turns this law into something real. It runs through your senators and your representative. And it runs through you, whoever you are in this story. Make the appointment. Tell your story in your own words. Ask Congress to fund the law it already passed. The futures of hundreds of thousands of people with FASD and the families who love them may depend on whether someone with a vote finally hears it from someone who lived it.
Want to Make an Impact?
You already know FASD. Now, you will know how to turn that understanding into action. Starting tomorrow, September 1, we are going to walk through 9 Days & 9 Ways you can make transform your knowledge and experience into change right now. Each day will include a short post and one small, impactful action for you to take, ending on 9/9 with a call to your members of Congress asking them to Fund FASD!
Take a look below for a sneak peek at what we have planned for September 1 through September 9!
- 9/1, Understand. What the FASD Respect Act actually promises, and what is still missing.
- 9/2, Connect. Join our weekly drop-in and meet the advocates doing this with you. Save this Zoom link!
- 9/3, Research. Find out exactly who your two senators and one representative are.
- 9/4, Share Your Why. Put your story into a few clear sentences you can actually use.
- 9/5, Visibility. Show how you spread awareness, and help make a non-apparent disability impossible to overlook
- 9/6, Growth. Invite one person to advocate alongside you.
- 9/7, Close the Gap. Connect your experience to what funding would actually change.
- 9/8, Practice. Get call-ready with your script and your numbers in hand.
- 9/9, Make the Call. Ask your legislators to fund the law they already passed.
You can make the difference and help make sure Congress follows through on its intent to build better systems of care for the FASD community. Congress has the vote, but you have the knowledge and the story your legislators need to hear. Follow along for the next 9 days to make an impact and share this with others so they know what the FASD community needs.
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