I began working with CHI in August 2024, and from the very start, I kept hearing about the plans for a family conference in Liverpool, UK. Having only attended academic conferences, I had no idea what to expect from a family conference. As the months flew by, agendas were being sent around, registration numbers were rising, and details were being finalized in preparation for the conference. I was getting a picture in my head of what I thought the conference would be like, but the reality turned out to be so much more than I could have imagined.
On Thursday night, I helped Lily Barnett (CHI’s Communications Associate) with the check-in process to kick off the conference. As families arrived, many with their smiling children bouncing around, I realized how closely knit this community is. Nearly everyone seemed to know someone else, whether through previous conferences, interactions with CHI staff, or even seeing their doctors and nurses. At that point, I felt like the name tags I was handing out were more for my benefit than theirs. Seeing how well everyone knew each other, I was anxious about fitting into this well-connected web. However, I shouldn’t have worried about that at all. Many families recognized me immediately as “the new CHI hire” and immediately introduced themselves, making me feel welcome to the event that I was taking part in hosting.
Meals offered another chance to connect further with the families. Throughout the conference, families invited me to sit with them, sharing stories about travels, discussing differences in our cultures, and making light-hearted promises not to share how many pieces of cake we indulged in. The families openly shared the challenges of caring for children with HI—talking about the daily impacts of hypoglycemia, medications, frequent feedings, and doctor visits. Through their stories, I gained valuable insight into their lives. Mothers, fathers, and grandparents spoke of their fears for the future, yet they also shared their unwavering hope for better treatments—not only for their own children, but for others diagnosed with HI in the future.
Friday and Saturday were jam-packed with presentations from leading experts. Scientists shared exciting updates on groundbreaking research related to new drugs, genetic testing techniques, and the natural history of HI. Clinicians led panel discussions, answering questions from the families on topics of their choosing. We also heard personal HI-Stories from five families, including a first-hand account from one adult living with HI, who shared their experiences of diagnosis, daily life, needs, and hope. In two sessions, breakout groups were formed, consisting of families and clinicians coming together to exchange advice and questions on a particular, common-interest topic. Over dinner, a father expressed his gratitude for the breakout group designed specifically for dads. He shared that he came to the conference only expecting to listen and learn, but that group empowered him to open up and be vulnerable. This was a powerful reminder of the strong support system within the HI community.
Reflecting on the event, I am amazed by the collective strength within this community. Throughout emotional moments, there was always someone nearby for comfort and support. The bonds between families, clinicians, researchers, and biotech groups were clearly present and emphasized the importance of collaboration for advancing rare disease research. The connections formed at the conference extended far beyond just the sessions themselves. This conference not only deepened my understanding of the HI community but also reaffirmed my commitment to ensuring that our research and efforts truly meet their needs. I am proud to be part of an organization that prides itself on collaboration and empowering families affected by HI.
Ultimately, the family conference reinvigorated me as a research scientist in the field of HI. There is something uniquely meaningful about knowing the work we do is not just wanted, but deeply needed. Each day, I try to keep the perspective that each project I work on directly impacts a wonderful group of people, and now I know many of them by name. I look forward to reconnecting with these families at future family conferences and through their ongoing involvement with CHI. With the resilience, determination, and dedication of the HI community, I am confident we will one day live in a world free from the fear of lows.
Highlights from the Liverpool Family Conference – including a slideshow – can be viewed here; you can also view our speakers’ presentations here.
