Hello KIF1A Families, We arrived in New York City on May 5th and got settled into our apartment then on Monday we dove into dose one prep. Our first week and a half looked looked like this: It was a long week with a lot of hours spent in the hospital and waiting rooms but…
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Watch the news interview here: https://abc30.com/corcoran-police-boy/11802806/ FRESNO, Calif. (KFSN) — A little superhero got some big recognition. The Corcoran Police Department stepped up to celebrate a brave boy battling a rare disease. Meet two-year-old Beau. He’s a fun, energetic boy who is an inspiration to everyone around him. Beau is living with KIF1A, a neurological disorder…
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#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 and Genetic Characterization of a Cohort of Brazilian Patients With Congenital Ataxia KAND is a rare disorder,…
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https://www.giornaledibrescia.it/storie/malattie-rare-unassociazione-per-ale-e-i-bimbi-con-la-mutazione-del-gene-kif1a-a0q18a5s
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April 28th is KIF1A Day! Join us in celebration! Topics include: Donate to our TAP Fundraiser in honor of KIF1A Day. ASCEND Enrollment Lagging We need ALL KAND warriors enrolled ASCEND is our Natural History Study. The goal is to: This is all online. It takes 2-6 hours of your time. Translation is available through…
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Link to Inside Edition 10 minute interview with Amanda and Emma. By ANDREA SWINDALL, First Published: 8:34 AM PDT, April 6, 2024 KIF1A Associated Neurological Disorder is a rare severe neurodegenerative disease caused by mutations in the KIF1A gene, Amanda Burrett says. Only about 550 known families have been affected. Amanda Burritt’s daughter Emma is living with…
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By Luke Rosen, Published on Medium Dec 21, 2022 Our daughter is a superhero. She is a pioneer, and she is changing. Susannah has a rare neurodegenerative condition called KIF1A Associated Neurological Disorder, or KAND. She joins a handful of people in a united community each with very real desperation and hope. Our collective hope is…
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Sloane is an adorable 3 year old with KAND. She is scheduled to be the 2nd patient in the world to receive ASO therapy for KAND. Her mother, Megan, has offered to share their experience and journey with everyone to help us understand the process and to share in their hopes, fears, challenges, and successes…
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“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.”
Read More#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 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…
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