Hello, amazing KAND Community! I know I might sound like a broken record, but we have SO MUCH exciting news and information to share this month! Here’s a sneak peek at what’s in store: Let’s dive in and explore all these wonderful updates together! UPCOMING MEETINGS *Times are Eastern Time Zone. ASO therapy: Positive Clinical…
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Hello KIF1A Families, Sloane received her third dose of the ASO on August 1st. We had pre-dose bloodwork, PT evaluation, and research EEG and then post-dose bloodwork, EKG, and research EEG. No substantial motor changes from what we were already seeing with this dose, but we did have one huge milestone this month…Sloane’s first day…
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“He enjoys making others laugh with his quick wit and his smile is contagious. He loves being with family & friends.”
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“Pauline is the joy of the family. She was the angel who came to bring us even closer together.”
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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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