Welcome to this month’s edition of the KIF1A.ORG newsletter! We have some exciting news to share with you so read on and stay informed! SAVE the DATE! 2025 KAND Family & Scientific Engagement Conference We’re excited to announce the official dates for our 2025 KAND Conference! Mark your calendars for July 25-26, 2025, and plan…
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“We dream of being able to find in Italy the knowledge and trials that are available in the USA today. For this reason we decided to fund a KIF1A association also in Italy, in collaboration with other Italian parents.”
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September was packed with informational meetings, grant submissions, global connections with scientists, impact reports, awards, and outstanding community fundraising achievements! Keep reading to discover these amazing milestones and learn how you can get involved to make an IMPACT too! UPCOMING MEETINGS *Times are Eastern Time Zone. MCRI Impact Report In 2020, we provided MCRI and…
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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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