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…
Read More
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.
Read More
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…
Read More
King Collier is a KIF1A superhero. Hometown: Queens, NY Age: 2.5 years The King of Queens Total Superhero
Read More
Eleanor and Florence are KIF1A superheroes. Age: 20 Hometown: Kent, UK Superhero KIF1A Role Models
Read More
Ashley is a KIF1A superhero. Hometown: Dallas, TX Age: 9 months Has an incredible big sister. Total Superhero.
Read More
By Luke Rosen On December 18, 2014, President Obama signed into law an amendment to the Newborn Screening Saves Lives Reauthorization Act of 2014 giving the Secretary of Health and Human Services authority to regulate newborn screening tests. Before this amendment was passed, newborn screening polices varied from state to state. The amendment included new tracking…
Read More
The vocabulary of a KIF1A mutation is very confusing. This variant has it’s own language, and it’s a foreign one. For instance, the word “progressive” is the opposite of a child making progress.
Read More