Conference 2024

Reflections on the 2nd International Argonaute Syndromes Family Workshop

Coming back from the 2nd International Argonaute Syndromes Family Workshop in Copenhagen, I’m filled with a mix of emotions—hope, gratitude, and determination. Held from August 23 to 25, 2024, this event wasn’t just a meeting; it was a gathering of hearts and minds united by a shared purpose: to make life better for our children affected by ultra-rare AGO1 and AGO2/Lessel-Kreienkamp syndromes.

The workshop brought together families like ours, researchers, and clinicians from around the world. For us, it was a unique chance to connect with others who truly understand what it means to navigate life with a child living with Argonaute syndrome. It was a reminder that, although this journey can feel isolating, we are not alone.

One of the most moving parts of the workshop was hearing from the researchers who are dedicating their careers to studying Argonaute syndromes. They shared their latest findings, and it was incredible to see their passion and commitment. But what struck me the most was how much they valued the stories and experiences we, as parents, brought to the table. Our daily struggles, triumphs, and observations gave them a deeper understanding of the real-life impact of this condition.

The presentations were enlightening, but the conversations in between were just as impactful. Sitting with another parent who faces the same challenges, hearing their story, and sharing ours—it’s hard to put into words how much that connection means. We talked about everything: managing therapies, the emotional toll, and the small victories that keep us going. There was comfort in knowing we are all walking this path together, no matter where in the world we’re from.

For me, this workshop wasn’t just about learning; it was about recharging my hope. Seeing the dedication of the researchers and the resilience of other families reminded me why we keep pushing forward. We’re not just waiting for a cure—we’re actively part of the process, supporting research, raising awareness, and advocating for our kids.

As we said our goodbyes, the announcement of the next meeting in Prague in August 2025 filled the room with excitement. It’s not just another date on the calendar; it’s a promise to keep moving forward, together.