Caitlin is a KIF1A superhero. Hometown: Northamptonshire, UK Age: 5 years Superhero filled with love and laughter
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Sadie’s Superhero Story
Sadie is a KIF1A superhero. Hometown: Negaunee, MI Age: Nearly 4 All-Star Wrestler Total Superhero
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Parker’s Superhero Story
Parker is a KIF1A superhero. Hometown: Springfield, MO Age: 5 Professional Comedian Total Superhero
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Rikki’s Superhero Story
Rikki is a KIF1A superhero. Age: 4 years Loves princesses and music. One of the bravest superheroes in the world. Rikki rocks, and so does her whole family.
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Research Simplified with Dominique Lessard
Research Simplified with Dominique Lessard Dominique Lessard collaborated with KIF1A.ORG to explain the KIF1A research being led by her and others at Berger Lab. Through this research we learn what distinguishes the KIF1A motor protein as one of the most effective at cargo transport. In this edition of Research Simplified, we’ll take Dominique’s research paper,…
Read MorePause
By Sally Jackson Originally published April 17, 2018 I was recently asked if I was confident that a cure for KIF1A would be found – and the way in which I was asked was very nearly a rhetorical question; “And you believe that a cure will be found, yes?” My answer, though, was not automatic….
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Brayden’s Superhero Story
Joseph “Brayden” Chittum is a KIF1A superhero. Hometown: Buena Vista, Virginia Age: 8 years old Superhero Adventurer
Read MoreThe Elevator
By Luke Rosen Originally published March 8, 2018 A few months ago I was invited to speak to a group of medical students about KIF1A and how our daughter was finally diagnosed with such a rare condition. We talked about the difficulty of accessing appropriate genetic testing, and the delay in receiving results. A student asked me…
Read MoreCost Analysis of Starting a Rare Disease Foundation
By Luke Rosen Originally published August 31, 2017 As our foundation thrives, more families with KIF1A find our community, and scientific discovery is taking flight, an important conversation emerges about how family and patient-led foundations start — and if it’s possible to facilitate the discovery of treatment for rare disease. A large part of that…
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Kiara’s Superhero Story
Kiara is a KIF1A superhero. Hometown: Farmington, ME Age: 6 years Monster Truck Driver Total Superhero
Read MoreThe Shoulder Flop
By Luke Rosen Keeping our kids safe is every parent’s number one job. Even as an adult I associate protection and safety with my childhood home and my loving parents. It’s a great relief when our children finally learn where to go and who to find when they’re in danger. More than a relief, it’s…
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