Behind the Episode | Every Minute Counts: How One Child in Iceland Sparked a Global Movement

Sigurður Hólmar Jóhannesson is the father of Sunna Valdís, who was born in 2006 and was diagnosed with Alternating Hemiplegia of Childhood (AHC). Sunna is the only person diagnosed with AHC in Iceland.Following her diagnosis, Sigurður founded the AHC Association of Iceland and later co-founded the AHC Federation of Europe, where he currently serves as President. He also co-founded the AHC International Alliance, bringing together patient organizations from around the world to advance collaboration and research.Sigurður is COO of Góðvild (Goodwill), an Icelandic charity supporting children and adults with disabilities and their families.He is the executive producer of the award-winning documentary Human Timebombs (2015), which tells the story of families living with AHC, and A Rare Journey (2025), an award-winning documentary highlighting the lives of children with rare diseases in Iceland.Before dedicating his career to patient advocacy and entrepreneurship, Sigurður worked as an air traffic controller. Today, he is the owner and CEO of Mobility and Ozon, companies focused on improving quality of life through mobility solutions and health products.www.ahc.iswww.ahceurope.orgwww.ahcim.com www.humantimebombs.comwww.mobility.is www.betridagar.is Miles’ Obituary: https://memorials.standardfuneralcenter.com/miles-powell/5722988/ForLandry: https://www.instagram.com/forlandry?utm_source=ig_web_button_share_sheet&igsh=ZDNlZDc0MzIxNw==