#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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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: 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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#ScienceSaturday: November 9, 2019

#ScienceSaturday: November 9, 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. Recent KIF1A-Related Research Targeted Resequencing Identifies Genes with Recurrent Variation in Cerebral Palsy Research published this…

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#ScienceSaturday: November 2, 2019

#ScienceSaturday: November 2, 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. Recent KIF1A-Related Research New Research Simplified Resource from KIF1A.ORG We teamed up with KIF1A.ORG Research Team member Dominique…

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What Is KIF1A?

What Is KIF1A?

A KIF1A diagnosis can be scary, stressful and confusing. You’ve likely entered a whole new world of medical jargon and uncertainty. Complex scientific explanations about KIF1A rarely help families living with this diagnosis. We’re here to help.

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#ScienceSaturday: October 26, 2019

#ScienceSaturday: October 26, 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: October 19, 2019

#ScienceSaturday: October 19, 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: October 12, 2019

#ScienceSaturday: October 12, 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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#WeTackleRare, Do You?

#WeTackleRare, Do You?

What if we transformed the way our society views, funds, and engages with rare disease research? What if we lifted up scientists and doctors the same way we lift up professional athletes? What if we supported the world’s best and brightest researchers working on the next breakthrough treatment? The community behind #WeTackleRare is determined to…

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