How JAX Helped KIF1A Kids Get A Mouse

Published on August 15, 2017 Grace Niewijk recently interviewed me about the incredible scientists at The Jackson Laboratory and how they helped our KIF1A families. We talked about the campaign #WeNeedAMouse and our quest for mouse models so scientists can study KIF1A. Check out some of the mouse videos and even a song written just…

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Ovid Therapeutics & Columbia University Join Forces to Accelerate Development of Treatments for KAND & Other Rare Conditions

Ovid Therapeutics & Columbia University Join Forces to Accelerate Development of Treatments for KAND & Other Rare Conditions

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…

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KIF1A.ORG Is Rare As One

KIF1A.ORG Is Rare As One

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…

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Dr. Wendy Chung in the News

Dr. Wendy Chung in the News

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!

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Community Call to Action: Urge Congress to Save NIH Funding

Community Call to Action: Urge Congress to Save NIH Funding

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…

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Urgent Message from KIF1A Families: We Need NIH Funding

Urgent Message from KIF1A Families: We Need NIH Funding

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…

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No Time to Wait for #GivingTuesday

No Time to Wait for #GivingTuesday

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…

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