Eating Difficulties: A Journey with Argonaute Syndrome Feeding should come naturally, right? Many doctors reassure parents that children won’t let themselves starve – their bodies will demand nourishment. While that might hold true for neurotypical children, it’s not always the case for those with ultra-rare conditions like Argonaute Syndrome. In fact, 30% of children with Ago1 Syndrome and 35% with Ago2 Syndrome require feeding tubes or PEGs because they cannot meet their nutritional needs...

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...

From Awareness to Therapy: A Year of Action Around AGO-Related Rare Diseases Rare diseases are often described as “rare” only from a statistical perspective. For affected families, they are a daily reality. Over the past year, the AGO community—patients, families, scientists, and clinicians—has taken meaningful steps to ensure that conditions linked to Argonaute (AGO) genes are better understood, more visible, and, ultimately, treatable. Building Awareness and Social Engagement One of the...