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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#ScienceSaturday: February 1, 2020

#ScienceSaturday: February 1, 2020

#ScienceSaturday posts share relevant and exciting scientific news with the KAND community, and are compiled by Alejandro Doval. Alejandro is from Spain and serves as Team Leader of the KIF1A.ORG parent-led Research Engagement Team. Send news suggestions to our team at impact@kif1a.org.

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What Matters Most to KAND Families?

What Matters Most to KAND Families?

At the 2019 KAND Family & Scientific Engagement Conference, we asked families affected by KIF1A Associated Neurological Disorder (KAND) to help people understand their challenges and what matters most to them.

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#ScienceSaturday: January 25, 2020

#ScienceSaturday: January 25, 2020

#ScienceSaturday posts share relevant and exciting scientific news with the KAND community, and are compiled by Alejandro Doval. Alejandro is from Spain and serves as Team Leader of the KIF1A.ORG parent-led Research Engagement Team. Send news suggestions to our team at impact@kif1a.org.

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Lhassa’s Superhero Story

Lhassa’s Superhero Story

Written in September 2019, Anouk shares her powerful journey from devastation to resilience after her daughter, Lhassa, was diagnosed with KIF1A Associated Neurological Disorder. “You have become my inspiration. My best teacher ever. A philosopher ignoring her talent. You give me the energy to fight for you and other children like you.”

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#ScienceSaturday: January 18, 2020

#ScienceSaturday: January 18, 2020

#ScienceSaturday posts share relevant and exciting scientific news with the KAND community, and are compiled by Alejandro Doval. Alejandro is from Spain and serves as Team Leader of the KIF1A.ORG parent-led Research Engagement Team. Send news suggestions to our team at impact@kif1a.org. KIF1A-Related Research Tracking Down the Fast and Superprocessive KIF1A with Gold Scattering Microscopy Dr. Allison Gicking…

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#ScienceSaturday: January 11, 2020

#ScienceSaturday: January 11, 2020

#ScienceSaturday posts share relevant and exciting scientific news with the KAND community, and are compiled by Alejandro Doval. Alejandro is from Spain and serves as Team Leader of the KIF1A.ORG parent-led Research Engagement Team. Send news suggestions to our team at impact@kif1a.org. What Is KIF1A? Has your family recently received a KIF1A diagnosis? You’ve likely entered a whole…

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#ScienceSaturday: January 4, 2020

#ScienceSaturday: January 4, 2020

#ScienceSaturday posts share relevant and exciting scientific news with the KAND community, and are compiled by Alejandro Doval. Alejandro is from Spain and serves as Team Leader of the KIF1A.ORG parent-led Research Engagement Team. Send news suggestions to our team at impact@kif1a.org. KIF1A-Related Research New Genetic Causes of Rett Syndrome Found in Chinese Infants, Study Reports The team…

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#ScienceSaturday: December 28, 2019

#ScienceSaturday: December 28, 2019

#ScienceSaturday posts share relevant and exciting scientific news with the KAND community, and are compiled by Alejandro Doval. Alejandro is from Spain and serves as Team Leader of the KIF1A.ORG parent-led Research Engagement Team. Send news suggestions to our team at impact@kif1a.org. KIF1A-Related Research Looking Back & Marching Forward According to PubMed.gov, researchers published 28 papers in 2019…

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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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#ScienceSaturday: December 14, 2019

#ScienceSaturday: December 14, 2019

#ScienceSaturday posts share relevant and exciting scientific news with the KAND community, and are compiled by Alejandro Doval. Alejandro is from Spain and serves as Team Leader of the KIF1A.ORG parent-led Research Engagement Team. Send news suggestions to our team at impact@kif1a.org. Research Matters: KIF1A Families Have a Message for Congress Read the full statement from the KIF1A.ORG…

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