An Update from Rikki’s Family July 2021 Rikki is almost 9 years old now. She pushes forward everyday. She does not let her KIF1A stop her from participating in everyday obstacles. She has become a big sister as of June of 2020 and is a big help when it comes to taking care of her…
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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,…
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By Sally Jackson 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. An enthusiastic “YES! Of course!”…
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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…
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By Luke Rosen We need the world to know about KIF1A. KIF1A is a gene. A mutation in that gene is causing the neurological disease our daughter was diagnosed with last year. KIF1A is stealing away Susannah’s steps and sight. She’s not alone. So we scream from the mountaintops. We fight to get kids the tests…
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By Luke Rosen Parenting a kid with special needs requires a lot of writing. It seems like I’m constantly writing, which is ok because… well, I’m a writer. Sitting at my desk typing a blog post is far less stress-inducing than the painful daily scribble that comes along with a rare genetic disorder.
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Kiara is a KIF1A superhero. Hometown: Farmington, ME Monster Truck Driver Total Superhero
Read MoreBy 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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King Collier is a KIF1A superhero. Hometown: Queens, NY Age: 2.5 years The King of Queens Total Superhero
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Eleanor and Florence are KIF1A superheroes. Age: 20 Hometown: Kent, UK Superhero KIF1A Role Models
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Ashley is a KIF1A superhero. Hometown: Dallas, TX Age: 9 months Has an incredible big sister. Total Superhero.
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