Sigurður Hólmar Jóhannesson is a patient advocate, entrepreneur, and father of Sunna Valdís, who lives with Alternating Hemiplegia of Childhood (AHC), one of the world’s rarest neurological disorders.
For nearly twenty years, Sigurður and his family have navigated the daily realities of caring for a child with a complex neurological condition. Faced with limited treatment options, he has worked alongside physicians and researchers while exploring a wide range of complementary approaches — including nutrition, lifestyle interventions, and hemp-derived cannabinoids — to improve his daughter’s quality of life. Some of these approaches have had a profound positive impact on Sunna’s symptoms and daily functioning, shaping his belief that patients and families can play an important role in advancing knowledge alongside science.
Sigurður is the founder and President of the AHC Association of Iceland, President of AHC Europe, co-founder of ATT NOW, and former President of the Icelandic Hemp Association, where he helped raise awareness of the therapeutic potential of hemp while advocating for evidence-based discussion and greater patient access.
Over the past 15 years, he has worked to build international collaborations between families, clinicians, researchers, policymakers, and industry to accelerate research and improve the lives of people affected by rare diseases.
As a panelist, Sigurður brings a unique perspective that combines lived experience as a parent, patient advocacy, entrepreneurship, and practical experience with integrative health approaches. His work reflects a commitment to bridging the gap between patients, science, and innovation in the search for better healthcare solutions.
