KIF1A Disorder

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Powerful representation on PBS

I read The Gene as soon as it was published, desperate to understand how a single, random mutation could so cruelly limit my son’s life. Seeing the story of Susannah and her parents, Dr., and this community featured in the PBS documentary adaptation has been so powerful. We see our family in yours. Thank you for sharing your story.

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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.

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