While I think most of our readers will understand the enormity of today’s title, it’s worth stating explicitly that Susannah Rosen is on a huge journey. We often call members of our community Superheroes, but internally I default to another term Luke Rosen and advocates use often: Pioneers. In fact the Yellow Brick Road Project,…
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“He really keeps us on our toes but he always has a smile on his face no matter the challenges he’s faced with.”
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Dear KAND Community! We are thrilled to announce the recent publication of two KAND Natural History Study articles! We invite everyone to read the articles and learn about the latest data on KAND symptoms. We sincerely thank all the participants and researchers whose contributions have been crucial in reaching these advancements in KAND knowledge and…
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Megan, Sloane’s mom, writes: Hello KAND Families! Sloane received her second ASO dose on June 6th. We were still in New York City. On the 5th we had her predose blood draws and her research EEG (the PT had a conflict so we had to move that to the 10th but typically there would also…
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“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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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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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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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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