“We love her just as she is and could never imagine not having her with us. She completes our family in a quirky kind of way. We won’t ever stop fighting to get her well. I believe in miracles, and she is one.”
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#ScienceSaturday: April 20, 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 Presynaptic perspective: Axonal transport defects in neurodevelopmental disorders When you get caught in a traffic jam, there can…
Read More#ScienceSaturday: April 13, 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 Clinical exome sequencing uncovers genetic disorders in neonates with suspected hypoxic–ischemic encephalopathy: A retrospective analysis Brain injuries and…
Read More#ScienceSaturday: April 6, 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 Genetic Alterations in a Large Population of Italian Patients Affected by Neurodevelopmental Disorders We often talk about genetic…
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#ScienceSaturday: March 30, 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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Sophia’s Superhero Story
“This inspiring and incredible girl works so hard every single day as do all the people who are by her side every minute of the day to help her through it. She loves to sing, chat, swim and above all do her best to crush her exercise goals…her favorite line is Exercise makes me happy!“
Read More#ScienceSaturday: March 23, 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 exome sequencing in Serbian patients with hereditary spastic paraplegia This year we’ve seen several studies investigating the…
Read MoreScienceSaturday: 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…
Read More#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,…
Read More#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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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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