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 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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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…
Read More#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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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…
Read More#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…
Read More#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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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.
Read More#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.
Read More#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.
Read More#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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