If you’ve ever had the chance to meet Allison Moise—whether at one of our mom retreats, in a support group, or through Hope for HIE’s peer mentorship program—you probably felt it right away: that grounded, steady presence that makes you breathe a little easier.
Allison has worn many hats within our community: parent, peer, mentor, and fierce advocate. Over the years, she’s grown into a powerful voice for support and change—helping shape our peer mentorship program, guiding families through some of their most challenging moments, and representing Hope for HIE at national advocacy events. And the ripple effect of her support? It keeps growing—reaching new families and strengthening the bonds across our entire community.
With our theme for this month being Hope in Action, we wanted to sit down with Allison to help all of you hear more about her journey, her insights into peer support and advocacy, and what’s on the horizon.
Missed the live Q&A? No worries. Like any good partner, we took notes and are willing to share!
Allison is mom to Rob, who recently celebrated his eighth birthday! She has been connected with Hope for HIE since his early days, and like so many in our community, her first steps into this space were out of a need to find support and connection. She found it in the Hope for HIE Facebook groups and deeper still through the Mom Retreat in 2018, followed by family retreats in 2019 and 2022.
From there, things started to grow. She received so much support in the early days that she wanted to be able to provide that to others on this journey.
That’s a theme echoed often in our community—once you find solid ground, you give back. When our Peer Mentorship Program launched, it felt like the perfect fit. She became a Peer Mentor at first, then recently stepped into her new role as Peer Support Coordinator, and she also serves as the Clinical Trials Peer Lead for our active clinical trials.
It’s a lot of hats—but each one is worn with intention, heart, and a deep sense of giving back.
If you’re here, chances are you know the feeling: one minute, everything seems normal, and the next, you’re hearing three letters—HIE—for the first time in your life. It’s a sudden immersion into medical jargon, emotional overwhelm, and the weight of the unknown, all at once.
For Allison and so many other families, that moment of diagnosis changed everything. And that’s where peer support should step in, not just as a helpful resource but as a lifeline. Allison knows firsthand how powerful that can be. She remembers how isolating those early days felt and how meaningful it was to connect with other parents who didn’t need an explanation—who just knew. The shared experience of navigating the unknown, the “wait and see” phase and all the emotions that come with it created an immediate sense of belonging. She recalls it feeling like this collective exhale, and it was so valuable to her parenting journey that she knew she would be that for someone else someday.
Peer support, as she’s come to learn and tell others, is not about having all the answers. It’s about having someone next to you while you navigate the questions.
As the Peer Support Coordinator, Allison connects families with trained peer support mentors who can offer guidance, support, and shared, lived experience. She begins by reviewing applications for the various mentorship programs, including 1:1 support along the journey, loss mentorship, and on-call support. Once she has a clear picture of the applicants and their unique needs, Allison works to match them with the most appropriate mentors available.
Although there’s no way to guarantee a perfect match—since, as many families know, the HIE journey is unpredictable—Allison strives to make the best connection possible. Some mentors are more familiar with specific situations, like twins or foster-to-adopt circumstances, which can help ensure a better fit. However, as anyone who’s walked the HIE path knows, the experience is rarely the same for any two children or families, so the goal is always to provide meaningful, supportive connections that offer comfort and understanding.
Once a match is made, Allison sends an introductory email to both the mentor and mentee, which opens the door for the pair to decide how they’d like to communicate moving forward. Whether through email, phone calls, or text messages, the choice is theirs. Ultimately, the mentorship is a flexible, supportive relationship—there to provide a sounding board, a friendly ear, and a person who truly understands the journey.
The Peer Support program is growing, and it’s been exciting to see the involvement expand, with mentors taking part in monthly support groups and peer support office hours. Allison’s role helps make this a successful program, ensuring that everyone who reaches out for mentorship is connected with someone who can provide the support they need during a difficult and often isolating time.
As the Clinical Trial Peer Lead, Allison supports families enrolled in clinical trials with whom Hope for HIE has partnered through the Halo of Support model. Having personally enrolled her own child in clinical trials, Allison understands how daunting and overwhelming it can be. The ins and outs of research studies, the unknowns, and the emotional toll can leave families feeling uncertain.
That’s where Allison steps in to help. Her role involves supporting families enrolled in these active trials and those navigating the broader HIE journey. Allison works closely with Jen, Hope for HIE’s certified social worker, to connect families with relevant resources, and she liaises with research companies to ensure families’ needs are met. This can include addressing concerns about stipends, transportation, virtual appointments, or any other logistical questions that may arise. Allison views her role as a sounding board or a “middle-man” who can advocate for families, ensuring that the research process doesn’t add unnecessary complexity to their lives.
Research studies are about contributing to the greater good—advancing science and helping future families, and that shouldn’t come at the expense of making life harder for those volunteering their time.
Hope for HIE’s partnerships with academic and industry research institutions are grounded in a shared commitment: serving families together. At the heart of this collaboration is the Halo of Support model—a program designed to make clinical trials more accessible, supportive, and family-centered.
Whether a family chooses to participate in a trial or is simply exploring what’s next in their HIE journey, the Halo of Support ensures they’re never navigating alone. This model connects families with Hope for HIE’s experienced team— like Allison— offering guidance, emotional support, and practical resources. For those enrolled in trials, that support continues with follow-ups, reminders, and a dedicated network that includes social workers, child life specialists, and peer mentors who genuinely understand the path ahead.
Researchers and hospitals benefit, too. By working hand-in-hand with medical teams, Hope for HIE helps remove barriers like logistics and accessibility, strengthen family engagement, and improve participation from start to finish.
A few weeks back, Allison had the opportunity to represent Hope for HIE at an advocacy training with the Epilepsy Foundation. (Let’s take a moment to brag, shall we? Out of hundreds of applicants, only 30 were chosen, and Allison was selected to be part of this exclusive cohort!)
It was an incredible experience—intense, she recalls, but valuable. This was the first-ever “boot camp” organized by the foundation, and it was remarkable to be surrounded by like-minded individuals who all shared the same drive to push forward and make a meaningful impact. While many participants were from the epilepsy community, the lessons learned were highly relevant to the HIE world as well:
The training focused on pharmaceutical companies’ processes to bring new medications and devices to market. One note that stuck out most to Allison was how strongly patient advocacy plays a role in every stage of this process—from the early stages of development to publication. She and the other chosen advocates learned how crucial it is to integrate patient voices and lived experiences into the process. After all, once a medication or device is in action, it’s the families who are directly impacted, and their feedback can be critical in refining or adjusting treatments based on real-world use.
One of the most enlightening parts of the training, she says, was learning about how the FDA incorporates patient advocacy and experience into clinical trials. Through their meetings, families can voice their concerns and share their lived experiences, which are taken into account during the decision-making process. Families have written letters to the FDA detailing their experiences, and these stories are given serious weight. It’s not just about the science—it’s about making sure that the patient’s needs, challenges, and realities are understood and considered.
The training also helped demystify the research process, particularly how companies work with academic institutions and pharmaceutical or medical device companies to get new treatments into the hands of patients. The journey from discovery to clinical trial is a complex and lengthy one—often taking years to go from a promising academic discovery to a medication available to the public. This process becomes even more challenging when dealing with babies and children, as additional safety data is required before moving forward with pediatric trials.
For example, one of Hope for HIE’s partners (Realta) is in a Phase 2 trial for a new peptide discovery. The team behind this discovery first began working on it 15 years ago, and they are now testing its safety and efficacy in humans. Before a new drug or treatment can be tested on children, it must pass rigorous safety checks in animals or non-human models and undergo clinical trials with adults before being considered for pediatric use.
The process of bringing new treatments to families is not only lengthy but also filled with challenges. Families are understandably cautious when it comes to new treatments—safety is a major concern, and it’s crucial to question the clinical data behind a new drug. That’s where Allison’s role becomes so vital: she helps families navigate the overwhelming world of clinical trials by providing clear information, answering questions, and offering support.
The call for more research in the HIE community is loud and clear. HIE impacts children in many different ways, and its complexity, combined with co-occurring conditions, makes ongoing research and advocacy crucial for better understanding and addressing these challenges. As part of the Epilepsy Foundation’s ongoing efforts to educate family advocates, they will host quarterly calls to explore ways to elevate family voices in advocacy work. Allison looks forward to being a part of these conversations and continuing to represent the voices of families affected by HIE.
When it comes to advocacy, Allison has one starting point to share with others: get involved where and when you can, and don’t be afraid to speak up. Allison describes herself as a walking, talking billboard for HIE. Whether it’s wearing a hoodie with the Hope for HIE logo or just starting a conversation, you never know who might be looking for support or taking an interest in the cause. That’s the heart of advocacy—connection, resources, and awareness. From there, families can choose to advocate on a micro or macro level, whatever feels right for them.
Looking ahead, Allison will be attending the upcoming Early Connections Conference at Perkins School for the Blind in Massachusetts, a place that holds special significance for her, as they supported Rob after his CVI—a common secondary diagnosis for HIE families. She’ll be setting up a booth to connect with others, spread awareness, and ensure new families know that Hope for HIE is here to support them. It’s a perfect example of how small actions can have a big impact on raising awareness and reaching those who need it most.
Looking ahead, Allison sees the role of peer support continuing to grow and evolve within Hope for HIE. Over the past 8 years, she’s been part of this community, watching it double in size, and the need for connection has never been more critical. With this growing need come future solutions—like expanding the peer support mentorship program to include more diverse backgrounds and experiences.
Allison believes advocacy momentum will only increase as research continues to grow, particularly with recent expansions. She recalls that, in the past, research was mainly focused on cooling therapies or studies related to epilepsy and medical equipment. Now, thanks to advocacy efforts, research on HIE is broadening, and people are finally starting to recognize the unmet needs of families affected by HIE.
While there are many resources out there, these are the go-to starting points for Allison, in addition to the specialized HIE groups she’s part of:
Opting in to Hope for HIE Support Initiatives
For families interested in participating in Hope for HIE’s support initiatives, here’s how you can get involved:
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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