KIF1A day was Sunday, April 28th! In honor of Sutton Box, daughter of Gavin and Hayley Box, a student at PES and others with this diagnosis. They celebrated her super specialness with a "Dress like a superhero" day on Thursday April 25th.
A few things about KAND (KIF1A Associated Neurological Disorder):
-It is a rare neurodevelopmental and neurodegenerative disorder.
-There are currently just over 550 known families impacted by this condition worldwide.
-Mutations in the Kif1a gene can cause many symptoms. Sutton's specific symptoms are cognitive impairment, optic nerve atrophy, cortical vision impairment, spasticity, peripheral neuropathy, and seizures. Basically, she can't walk, talk, or see.
-Because mutations in the Kif1a gene mostly occur spontaneously and are not inherited, this can be difficult to diagnose. It requires extensive genetic testing. Otherwise, it is sometimes misdiagnosed as cerebral palsy.
-Research for treatment is happening right now, and they are about to enter Phase 2 of the Treatment Accelerator Program which is drug screening.
If you would like to help fund Phase 2 you can visit