Beau the Superhero!

Beau the Superhero!

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: May 4, 2024

#ScienceSaturday: May 4, 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 and Genetic Characterization of a Cohort of Brazilian Patients With Congenital Ataxia KAND is a rare disorder,…

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April 2024

April 2024

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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Mother of 4-Year-Old Living With KAND, One of the Rarest Disorders in the World, Advocates to Find a Cure

Mother of 4-Year-Old Living With KAND, One of the Rarest Disorders in the World, Advocates to Find a Cure

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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Antisense Makes Sense

Antisense Makes Sense

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’s Journey with ASO Therapy

Sloane’s Journey with ASO Therapy

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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Summer’s Superhero Story

Summer’s Superhero Story

“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: 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…

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#ScienceSaturday: April 13, 2024

#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…

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#ScienceSaturday: April 6, 2024

#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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