Category: From KIF1A.ORG

This week we were going to post a “Save the Date” for #GivingTuesday, which is supposed to be held on December 3rd. But last week we lost KIF1A warrior Lhassa, bringing us another painful reminder that KIF1A families are running out of time. We have no time to wait for #GivingTuesday. We need a KIF1A…

What if we transformed the way our society views, funds, and engages with rare disease research? What if we lifted up scientists and doctors the same way we lift up professional athletes? What if we supported the world’s best and brightest researchers working on the next breakthrough treatment?

By Kathryn AtchleyPresident, KIF1A.ORG KIF1A Community, I’m writing this on the first day of my full-time position as President of KIF1A.ORG. I thank all of the families, friends and everyone who believes in our mission for making this new day possible. Your generosity, encouragement and engagement will fuel the next chapter of progress at KIF1A.ORG….

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…

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…

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…

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…