I am the father of a child with a rare neurological disease caused by a mutation in her KIF1A gene. In 2017 we started KIF1A.ORG, an organization working to connect families affected by KIF1A Associated Neurological Disorder (KAND) and accelerate the discovery of treatment.
Community Voices

Evacuation Drills are Terrifying for Some Kids

Our #KIF1ADisorder kindergartner has an evacuation drill in a new, crowded public school. Bright flashing lights cause seizures, loud noises and crowds terrify her, and high stress situations don’t work for her. She’s resilient though. #RareDisease families have enough to deal with without worrying about school shootings and evacuations.

She’s gonna rock this.

1 person is talking about this