Category: From KIF1A.ORG

Dear KAND Families, It is with great hope for the future that I share this news—news with enormous impact on our mission to discover treatment for our loved ones living with KIF1A Associated Neurological Disorder. This morning Ovid Therapeutics announced a research collaboration with the Chung Lab at Columbia University. Ovid and Columbia have joined…

We are relentless. Today that “we” continues to grow.

A PDF of this statement can be downloaded here. The KIF1A.ORG Leadership Team is closely monitoring reports that governments and medical institutions will soon be implementing catastrophic and discriminatory pandemic ventilator allocation protocols, preventing life-saving access to ventilators.

Families and Friends of KIF1A.ORG: We are thrilled to announce Dr. Dominique Lessard has joined KIF1A.ORG’s Leadership Team as the organization’s Science Communication Director!

2020 is a transformational year for our community. We are excited to announce that KIF1A.ORG is one of 30 patient-led rare disease organizations chosen to join the Rare As One Project, launched by the Chan Zuckerberg Initiative (CZI) to help rare disease communities accelerate research and drive progress against rare disease. With Rare As One…

Congratulations to our lead researcher Dr. Wendy Chung for being named chief of the Division of Clinical Genetics in the Department of Pediatrics at Columbia University Irving Medical Center!

KIF1A Families and Friends across the United States: On Friday, December 6, we launched an urgent message to Members of U.S. Congress regarding NIH research funding that rare disease communities like ours are depending on for life-changing and life-saving treatment. There is a very real chance that money allocated to researching rare diseases like KIF1A…

Members of Congress, We are waiting for NIH funding, but our children who are battling a rare neurodegenerative disorder are running out of time. The continuing resolution that the NIH is currently operating under harms the rare disease community by blocking critical funding for scientific research. We need you to pass a full-year budget that…

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?