“The power of sharing” — written by a mom after our very first conference — still rings true today, perhaps even more so.
As we return from the 3rd Argonaute Syndromes Scientific & Family Conference, those words feel more powerful than ever. This gathering once again proved that when families and researchers come together, we create not only knowledge, but also connection, purpose, and hope.
Families traveled from the United States, Canada, England, Poland, Slovakia, Czech Republic, Switzerland, and France. Over just a few days, strangers became friends and supporters.
Parents helped care for each other’s children so naturally that researchers joked they couldn’t tell which child belonged to whom. More than just a meeting, the conference became a place where families could say: “You are not alone. We get it.”
This sense of belonging is life-changing. Together, we have found our village.
The power of sharing also extended into the scientific program. Nobel Prize laureate Victor Ambros described the joint conference as “a synergy”: families inspire researchers with urgency and meaning, while researchers bring new insights and directions.
This year’s presentations highlighted exciting progress:
3D structures of mutant proteins
Mutation effects studied in worms
Classifying mutations as gain- or loss-of-function
Model systems now spanning worms, zebrafish, flies, and mice
These advances are already shaping translational research. In one remarkable breakout session, 10 world-leading scientists sat with families to discuss future strategies — repurposing existing drugs, screening new molecules, and exploring synthetic gene approaches. The atmosphere was collaborative, optimistic, and full of purpose.
Another major highlight was the Natural History Study involving 60 patients. Results will be finalized and submitted for publication later this year.
This study already gives us a clearer picture of the major symptoms of Argonaute Syndromes and shows where further research is most needed. Families can still participate until October — contributing directly to knowledge that will guide the next steps.
We are fortunate to have Professors Lessel and Piton leading this important work.
A conference of this scale only happens through dedication and teamwork. Our deepest thanks go to:
Kari & Jess – for their outstanding coordination
Aldona – for driving the science program and poster session
Antje – for her thoughtful moderation
Iben – for being there wherever needed
Your efforts made this gathering a success.
Though the conference flew by, its impact will last far longer. Together, we are advancing science, supporting families, and building a future filled with hope.
We can’t wait to see our growing village again in August 2027 in Toronto, Canada!
— AGO Alliance