Research Simplified with Dominique Lessard

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 More

Pause

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….

Read More

The 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 More

Cost 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…

Read More

The 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…

Read More