KIF1A.ORG Community, We are thrilled to introduce you to two new staff members: Charlotte Klinepeter, Administrative Manager, and Aileen Lam, Science Communication Associate! Charlotte and Aileen bring valuable strengths and experiences to the organization and expand our capacity to accelerate our mission.
Read MoreKIF1A.ORG Accelerates KAND Research at Barinka Lab
KIF1A.ORG Community, We’re excited to introduce one of our newest partners, the Bařinka Lab at Institute of Biotechnology of the Czech Academy of Sciences in the Czech Republic! Our partnership will enable the Bařinka Lab to collaborate with HNF Pharma Inc. and The Jackson Laboratory to study a potential drug therapy for KIF1A Associated Neurological…
Read MoreKIF1A.ORG Accelerates KAND Research at McKenney Lab
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…
Read MoreKIF1A.ORG Is Growing!
Hello KIF1A.ORG community, Perhaps against all odds, 2020 has been a year of growth for the KIF1A community.
Read MoreHow 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…
Read MoreOvid 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…
Read MoreIonis Joins the KIF1A.ORG Mission
We are relentless. Today that “we” continues to grow.
Read MoreKIF1A.ORG Rejects Discriminatory Ventilator Allocation Protocols and Calls for Immediate Action
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.
Read MoreDr. Dominique Lessard Joins the KIF1A.ORG Leadership Team
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!
Read MoreKIF1A.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…
Read MoreDr. 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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