Hi KIF1A Families, Sloane received her forth ASO dose in October at 80mg. This dosing consisted of pre-dose bloodwork, research EEG, PT evaluation, and a cognitive evaluation. The biggest changes we have seen so far have been in her speech and cognitive awareness. She recently started counting to 10 on her own! We are noticing slightly…
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“Su risa contagia de alegría en su alrededor. (Her laughter spreads joy all around her.)”
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“She was diagnosed at one month old, via genetic testing, and only given and expectancy of ‘6months to 4yrs, but expect it to be closer to 18months or less’–we were devastated.”
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“We are beyond proud of how resilient Emma is and continues to be. Despite everything working against her, she is the happiest little girl that can brighten up any room with just her smile.”
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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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