February 2024

February 2024

Call to Action for all KAND families and supporters that live in the US! Today, on Rare Disease Day, let’s all band together to reach out to our state’s Federal Senators and Representatives to ask for funding for rare disease research and for genetic testing to be available to all (without having to fight your…

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ScienceSaturday: March 16, 2024

ScienceSaturday: March 16, 2024

#ScienceSaturday posts share exciting scientific developments and educational resources with the KAND community. Each week, Dr. Dylan Verden of KIF1A.ORG summarizes newly published KIF1A-related research and highlights progress in rare disease research and therapeutic development. KIF1A-Related Research Whole genome sequencing increases the diagnostic rate in Charcot-Marie-Tooth disease Charcot-Marie-Tooth (CMT) disease is an inherited disorder that…

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#ScienceSaturday: March 9, 2024

#ScienceSaturday: March 9, 2024

#ScienceSaturday posts share exciting scientific developments and educational resources with the KAND community. Each week, Dr. Dylan Verden of KIF1A.ORG summarizes newly published KIF1A-related research and highlights progress in rare disease research and therapeutic development. Meet our Guest Bloggers! This spring we’ve been quite fortunate to be joined by 6 Master’s students from Columbia University,…

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#ScienceSaturday: March 2, 2024

#ScienceSaturday: March 2, 2024

#ScienceSaturday posts share exciting scientific developments and educational resources with the KAND community. Each week, Dr. Dylan Verden of KIF1A.ORG summarizes newly published KIF1A-related research and highlights progress in rare disease research and therapeutic development. KIF1A-Related Research SPARKing New Insight Into Autism Across the Lifespan When I was growing up, autism was still unfamiliar to…

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#ScienceSaturday: February 24, 2024

#ScienceSaturday: February 24, 2024

#ScienceSaturday posts share exciting scientific developments and educational resources with the KAND community. Each week, Dr. Dylan Verden of KIF1A.ORG summarizes newly published KIF1A-related research and highlights progress in rare disease research and therapeutic development. KIF1A-Related Research A Model for Chemomechanical Coupling of Kinesin‑3 Motor Like humans, KIF1A pairs walk one step at a time,…

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#ScienceSaturday: February 17, 2024

#ScienceSaturday: February 17, 2024

#ScienceSaturday posts share exciting scientific developments and educational resources with the KAND community. Each week, Dr. Dylan Verden of KIF1A.ORG summarizes newly published KIF1A-related research and highlights progress in rare disease research and therapeutic development. KIF1A-Related Research Overarching pathomechanisms in inherited peripheral neuropathies, spastic paraplegias, and cerebellar ataxias What causes KAND? At the simplest level,…

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#ScienceSaturday: February 10, 2024

#ScienceSaturday: February 10, 2024

#ScienceSaturday posts share exciting scientific developments and educational resources with the KAND community. Each week, Dr. Dylan Verden of KIF1A.ORG summarizes newly published KIF1A-related research and highlights progress in rare disease research and therapeutic development. KIF1A-Related Research Unraveling the genetic landscape of undiagnosed cerebellar ataxia in Brazilian patients In this week’s article, researchers in Brazil…

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#ScienceSaturday: February 3, 2024

#ScienceSaturday: February 3, 2024

#ScienceSaturday posts share exciting scientific developments and educational resources with the KAND community. Each week, Dr. Dylan Verden of KIF1A.ORG summarizes newly published KIF1A-related research and highlights progress in rare disease research and therapeutic development. KIF1A-Related Research Large-Scale Whole-Genome Analysis of HTLV-1–Associated Myelopathy Identified Hereditary Spastic Paraplegias Many disorders look similar to each other when…

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Harrison’s Superhero Story

Harrison’s Superhero Story

“Harrison is the most amazing little boy who makes us all so proud everyday. He is very determined and independent, he loves school, absolutely loves the outdoors, and has a wonderful brother and sister who support him at all times.”

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January 2024

January 2024

Bidding Sean Calamia a Farewell! Dear Sean, As you embark on a new chapter in your journey, we want to express our heartfelt gratitude for your unwavering dedication and contributions to KIF1A.ORG and our warriors. Your tireless efforts have made a profound impact on our community, and your passion for supporting KAND patients and families…

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#ScienceSaturday: January 27, 2024

#ScienceSaturday: January 27, 2024

#ScienceSaturday posts share exciting scientific developments and educational resources with the KAND community. Each week, Dr. Dylan Verden of KIF1A.ORG summarizes newly published KIF1A-related research and highlights progress in rare disease research and therapeutic development. Rare Roundup KRIBB develops new gene therapy candidate for hereditary spastic paraplegia This week we’re flipping the format and starting…

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