KIF1A parent Anouk shares her reflections on loss, resiliency and friendship after meeting other KIF1A parents for the first time at the KAND Conference in New York City.
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#WeNeedAKat
We are proud to announce that KIF1A.ORG just concluded our first KAND Family & Scientific Engagement Conference at Columbia University Medical Center. Since 2017, our community has made great progress, and experienced incredible heartache. The search for a brighter future is why we are #relentless in our mission to urgently find treatment for our children and loved ones with KIF1A Associated Neurological…
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Weronika’s Superhero Story
Weronika is a sweet child full of energy and smiles, and one of the first children from Poland diagnosed with KIF1A Associated Neurological Disorder.
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Enterprises of Great Pitch and Moment
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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Insights from RARE on the Road
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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Today Is A Good Day
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’s Superhero Story
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’s Superhero Story
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’s Superhero Story
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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Meet the New KIF1A.ORG
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’s Superhero Story
Susannah is a KIF1A superhero. Hometown: Harlem, New York Age: 5 years Baseball All-Star Rockstar sister Never quits
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