About KIF1A.ORG and the KIF1A Conference
KIF1A.ORG is celebrating Rare Disease Month with one goal: help as many KIF1A families from around the world attend our first KIF1A Family & Scientific Conference at Columbia University in New York City, August 16-17, 2019.
During the month of February, you can help us establish our KIF1A.ORG Family Travel Fund. Every dollar raised will help ease the financial burden on families from around the world who are excited to attend the largest gathering of KIF1A families to date.
We are determined to help as many KIF1A families as possible join us in New York for two days of community, collaboration and progress.
KIF1A.ORG was established in 2017 as a parent-led organization committed to discovering a cure for children living with KIF1A Associated Neurological Disorder. KIF1A causes a group of related, severe medical conditions that include spastic paraplegia, cerebellar atrophy, epilepsy, cognitive impairment, optic nerve atrophy and peripheral neuropathy. These conditions are progressive and are associated with neurodegeneration, igniting a fierce sense of urgency in our mission.
With approximately 200 known cases in the world, our community is rare. We see this challenge as an opportunity to establish a strategic research plan to improve quality of life, clinical care and develop treatments for those affected by KIF1A Associated Neurological Disorder.
It's hard to travel with a child who has complex medical needs. Donate today and help ease the burden of families traveling from around the world to take part in this event; an event that will bring us closer to developing treatment for KIF1A Associated Neurological Disorder.