Advocacy isn’t just a buzzword for us—it’s about taking real action – whether big or small – to support families navigating HIE. Through Hope in Action, we’re working to raise awareness, connect families with essential resources, and push for meaningful change in healthcare, education, and policy.
And no matter what advocacy looks like to you, one thing is clear: real change happens when we take action together.
That’s why we recently sat down with David Ford, Hope for HIE’s Board President and experienced HIE advocate, to discuss the actionable steps families can take to turn their experiences into meaningful advocacy and drive change with elected officials (and so much more!)
Missed the live Q&A? No worries. Like any good partner, we took notes and are willing to share!
Advocacy isn’t one-size-fits-all. It takes on many forms—sometimes, it’s pushing for better neonatal care, ensuring children get the right school support, or ensuring the HIE community has a seat at the table in research and policy discussions. While big legislative wins matter, some of the most meaningful changes happen in everyday moments that shape how families access support, information, and resources:
Take connection, for example. Ten years ago, a family receiving an HIE diagnosis— even at a top NICU—was often left to figure things out on their own. Many didn’t receive a NICU support package, struggled to find reliable information, and had no immediate access to a community that understood. Parents like David recall falling into endless online searches, feeling lost and overwhelmed in those critical early days.
That’s not the case anymore. Because of persistent grassroots efforts—building relationships with hospitals, educating providers, and making sure families knew they weren’t alone—things have changed. Today, more families are getting connected earlier, receiving credible information, and finding a community faster. And that matters. Because when families have support, their outcomes improve.
Hope for HIE has also played a role in advancing research. Alongside two active clinical trials (ReaAlta Star Study and CoolPrime), we’re building an HIE Registry to improve understanding of HIE and drive better care and treatments. This kind of data simply didn’t exist before. Thanks to grant funding and collaboration with the Cerebral Palsy Research Network, researchers and medical professionals now have critical insights to address gaps in care and tailor interventions for those impacted by HIE.
Another major step forward? The Halo of Support—a program designed to make clinical trials more accessible and family-centered. It connects families with Hope for HIE’s experienced team, offering guidance, clear information, and emotional support—whether or not they choose to enroll in a trial. For those who do, it provides follow-ups, reminders, and a network of support from social workers, child life specialists, and peer support mentors who’ve been on this journey. Hospitals and researchers benefit, too, as Hope for HIE works alongside them to ensure families receive the support they need, improving trial participation and removing barriers like accessibility and follow-through.
Advocacy also means pushing for long-term care that reflects the realities of living with HIE. Right now, there are no standardized long-term follow-up guidelines for children with neonatal HIE—most are only closely monitored until age 2 or 3, even though developmental challenges can emerge much later. We’re actively working to change this. In February 2025, we hosted our second workshop at the International Newborn Brain Conference, continuing efforts to develop these much-needed guidelines. By collaborating with top researchers and clinicians, we’re ensuring that families have a roadmap for ongoing care rather than being left to navigate it alone.
And while these bigger initiatives are making a difference, advocacy also happens in small but powerful ways—like helping schools better understand the needs of children with disabilities, pushing for more inclusive playgrounds, or simply sharing your family’s story in a way that sparks awareness and change.
None of this progress happened overnight. It’s taken years of persistence, showing up, and making sure our community’s voice is heard. Every action—big or small—adds up, and together, we’re reshaping the future for HIE families.
Reaching out to elected officials might feel intimidating, but here’s the truth we want you to remember—they work on your behalf. And the more they understand the realities of living with HIE, the better equipped they are to advocate for meaningful change. So, how do you get their attention in a way that makes an impact? David’s got a few strategies to share!
| Start with a letter (or an email, handwritten note, carrier pigeon—you get the idea!) |
A well-crafted letter—whether typed and emailed or handwritten and mailed —can be powerful. Using one of David’s sample letters to his local legislature as a guide, we’ve created a template to help you hit key points about our community, the progress we’ve made, and the tangible needs we’re still fighting for. We also have a template for loss families to ensure your experiences and needs are acknowledged, too.
If you use this template, simply click on the link, make a copy of this view-only file, and then follow the helpful prompts.
But don’t stop there—make it personal.
| Share your story. |
Numbers and statistics don’t stick in people’s minds the way real-life experiences do. Talk about your child, the challenges you’ve faced, and the resources that have made a difference—like Medicaid covering vital therapies or special education services that help your child thrive. When policymakers hear firsthand how these programs impact families, it turns abstract policies into something tangible and urgent.
| Paint the whole picture— and that includes the challenges and the wins. |
It’s tempting to focus only on what’s hard or needs repair, but balance is key. Yes, share the frustrations—whether it’s insurance struggles, gaps in early intervention, or challenges accessing inclusive education—but also highlight the solutions that have worked. Officials need to know what’s helping families, not just what’s making life more complex or uncertain.
| Don’t just point out problems—offer solutions. |
Here’s the thing: you know better than anyone what your family needs. If a policy isn’t working, what would help fix it? If funding is needed, where should it go? The more specific you can be, the easier it is for officials to act. Instead of just saying, “This is a problem,” try instead, “Here’s how you can help.” Even if they can’t immediately commit to a solution, you’ve at least put it on their radar.
| Follow up – and know you may not always hear back right away. |
Government officials receive a high volume of calls, emails, and requests every day. If you don’t get a response, don’t take it personally—just follow up. A second (or third) message can be the nudge they need to reply, schedule a meeting, or take action.
At the end of the day, advocacy is about building relationships. Your voice matters. Your story matters. And by sharing it, you’re not just speaking for your family—you’re making a difference for the entire HIE community.
We know HIE can already come with overwhelming stress, and not everyone has time to meet with legislators or organize large efforts. But sending an email to a teacher? That’s advocacy. Posting in a local parent group to spread awareness? That’s advocacy. Signing a petition, sharing resources, or simply supporting another family in their journey—it all matters.
One of the best ways to share the load is by connecting with others who get it. Lean on other people. Whether it’s local families, an online support group, or others with the same concerns, having a space to vent, brainstorm, and support each other can make a world of difference. Sometimes, just knowing you’re not alone in the fight is enough to keep going.
At the end of the day, advocacy isn’t about doing everything—it’s about doing something whenever and however you can.
Over the past decade, the voices of HIE families have grown stronger, more organized, and more influential. That momentum will only continue. As we look ahead, we see opportunities to take more decisive action on legislative issues that directly impact our community. Disability advocacy, research funding, and access to essential supports will become an even more defined part of our mission.
A key goal for the future is to organize more direct calls to action when issues arise in specific geographic areas. Partnering with other organizations and mobilizing families when critical decisions are being made can help us drive meaningful change. The more people willing to share their stories and experiences, the stronger our collective voice becomes.
The world of HIE today looks very different from what it did 10 years ago—and it will continue to evolve in the next 10 years. Advocacy plays a crucial role in that transformation, and every effort, big or small, helps move us forward.
If you’re interested in advocacy but are unsure where to start, there are plenty of resources to help you.
Here are a few advocacy resources to check out:
To watch the full Q&A, visit our 2025 Awareness Month Playlist on YouTube, and click the button below for our key takeaways at a glance!
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