By Luke RosenJuly 11, 2019 Before all this happened, I wrote plays. Before Susannah was diagnosed with a rare neurodegenerative disease; before we started the foundation; before I knew about motor proteins and phenotypes; before special needs; before rare disease policy; before biotech; before that moment in the hospital elevator when everything changed, one of…
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KIF1A mom Jenni shares her insights after attending RARE on the Road, a Rare Disease Leadership Tour hosted by The EveryLife Foundation and Global Genes. At this workshop, Jenni connected with fellow rare disease advocates and found renewed hope for the future of the KIF1A community.
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By Charisma FreemanOriginally published May 13, 2019, in FOCUS + Fragile Kids ViewFinder Newsletter KIF1A mom Charisma reflects on the turmoil she experienced after learning her 7-year-old son had been misdiagnosed with cerebral palsy, and how she found strength in her new family—the KIF1A community—to fight for a brighter future.
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Noah is an adventurous and resilient seven-year-old from Illinois, USA, and among the first children diagnosed with KIF1A Associated Neurological Disorder.
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Jaybriel is a KIF1A superhero from California, USA. His family says “he is our superhero because he has the power to bring out the best in people everyday.”
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Abby is a loving and determined two-year-old from Missouri, USA, who was diagnosed with KIF1A Associated Neurological Disorder in January 2019.
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Today we relaunched our home at KIF1A.ORG. This new digital platform makes it easier for the global KIF1A community of families, researchers, clinicians, partners and supporters to advance our mission: Improve the lives of those affected by KIF1A Associated Neurological Disorder and accelerate research to find a cure. When KIF1A.ORG was established in 2017, there were fewer than…
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Susannah is a KIF1A superhero. Hometown: Harlem, New York Age: 5 years Baseball All-Star Rockstar sister Never quits
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Lily is a KIF1A superhero. Hometown: Alexandria, KY Age: 5 years Loves baby dolls, strollers and her family Toughest yet sweetest girl in town
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When a Superhero Falls By Ricardinho Qvistlund, Eleonora’s father Originally published April 11, 2019 (Translated from Swedish) At this night two months ago, you started your way towards the end, the acute condition was too tough for your body and the doctor declared that nothing more was to be done. Mom & Dad took the hardest…
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Ava is a KIF1A superhero. Hometown: Grain Valley, Missouri Age: 3 Outdoor Adventurer Total Superhero
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