May 2024

May 2024

Dear Community, As we step into the middle of the year, we’re filled with a sense of urgency and hope. Our mission to accelerate research and find a cure for KIF1A Associated Neurological Disorder (KAND) remains our guiding light. Right now, we are focused on raising money to begin Phase 2 of our Treatment Accelerator…

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The Year In Review: 2023

The Year In Review: 2023

Reflecting on a Remarkable Year: KIF1A.ORG’s 2023 Annual Report Dear KAND Community, Let’s take a moment to reflect on the incredible journey we’ve shared in 2023. It was a year filled with challenges, triumphs, and moments of growth that have shaped the very fabric of our organization. In our Year in Review, we invite you…

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Superhero Elena

Superhero Elena

“We really hope that someday there will be a treatment that can help stop the progression of the symptoms, and give Elena and us more years to enjoy together.”

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Sloane’s 1st ASO treatment

Sloane’s 1st ASO treatment

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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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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