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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#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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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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#ScienceSaturday: December 7, 2019

#ScienceSaturday: December 7, 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.

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#ScienceSaturday: November 23, 2019

#ScienceSaturday: November 23, 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 News NEXT: Luke Rosen, KIF1A.org, Discusses the Future of Rare Disease KIF1A.ORG co-founder Luke Rosen…

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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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