KIF1A.ORG Community, KIF1A.ORG is excited to share a series of announcements about recently funded projects powered to rapidly discover and develop treatments for people affected by KAND. First up: The McKenney Lab at University of California, Davis. Led by Richard McKenney, PhD, the McKenney Lab has long collaborated with KIF1A.ORG, and leads the field in…
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Hello KIF1A.ORG community, Perhaps against all odds, 2020 has been a year of growth for the KIF1A community.
Read MorePublished 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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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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We are relentless. Today that “we” continues to grow.
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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.
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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!
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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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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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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…
Read MoreMembers 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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