Interview with Sunna´s parents in Fréttatiminn on May 11th 2012 by Gunnhildur Arna Gunnarsdóttir.  The article is about the reality of living with AHC and how hard it can be to raise funds to research rare diseases.   There is also an interview with Sunna´s friend Ólafur Darri who is Icelands most beloved actor. He [...]

Dear families, Both sides of the Atlantic, Genetic research on AHC is going on with the aim to identify possible genetic mutations that were responsible for causing AHC.. The American AHC foundation AHCF is supporting several research groups in USA, and as you’ve been already informed, a European consortium gathering 3 genetic research groups (Italy [...]

Where are the parents?

They are on the phone to doctors and hospitals and fighting with insurance companies, wading through the red tape in order that their child’s medical needs can be properly addressed.

They are buried under a mountain of paperwork and medical bills, trying to make sense of a system that seems [...]

Abstract Abstract Objective: Alternating hemiplegia of childhood (AHC) is a rare and intractable disorder. The etiology and standard therapy of alternating hemiplegia of childhood remain unknown. The long-term effects of flunarizine or topiramate on patients with alternating hemiplegia of childhood are still not clear. Methods: Fifteen patients were investigated in this study. Their neurological disturbance [...]

Sunna Valdís is the daughter of Sigurður Hólmar Jóhannesson and Ragnheiður Erla Hjaltadóttir. This is her short STORY