#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 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?
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By Kathryn AtchleyPresident, KIF1A.ORG KIF1A Community, I’m writing this on the first day of my full-time position as President of KIF1A.ORG. I thank all of the families, friends and everyone who believes in our mission for making this new day possible. Your generosity, encouragement and engagement will fuel the next chapter of progress at KIF1A.ORG….
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KIF1A parent Anouk shares her reflections on loss, resiliency and friendship after meeting other KIF1A parents for the first time at the KAND Conference in New York City.
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Recent research on a subset of KIF1A mutations helps us understand how some KIF1A mutations can cause too much motor activity at the cellular level, leading to “uncomplicated hereditary spastic paraplegia.” KIF1A researchers Kyoko Chiba and Richard McKenney of University of California – Davis and Shinsuke Niwa of Tohoku University collaborated with KIF1A.ORG to bring…
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KIF1A parent Anouk shares her reflections on loss, resiliency and friendship after meeting other KIF1A parents for the first time at the KAND Conference in New York City.
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We are proud to announce that KIF1A.ORG just concluded our first KAND Family & Scientific Engagement Conference at Columbia University Medical Center. Since 2017, our community has made great progress, and experienced incredible heartache. The search for a brighter future is why we are #relentless in our mission to urgently find treatment for our children and loved ones with KIF1A Associated Neurological…
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Weronika is a sweet child full of energy and smiles, and one of the first children from Poland diagnosed with KIF1A Associated Neurological Disorder.
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Before all this happened, I wrote plays. Before Susannah was diagnosed with a rare neurodegenerative disease; before we started the foundation; before I knew about motor proteins and phenotypes; before special needs; before rare disease policy; before biotech; before that moment in the hospital elevator when everything changed, one of my jobs was teaching high…
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KIF1A mom Jenni shares her insights after attending RARE on the Road, a Rare Disease Leadership Tour hosted by The EveryLife Foundation and Global Genes. At this workshop, Jenni connected with fellow rare disease advocates and found renewed hope for the future of the KIF1A community.
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By Charisma FreemanOriginally published May 13, 2019, in FOCUS + Fragile Kids ViewFinder Newsletter KIF1A mom Charisma reflects on the turmoil she experienced after learning her 7-year-old son had been misdiagnosed with cerebral palsy, and how she found strength in her new family—the KIF1A community—to fight for a brighter future.
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