A message from Athena’s family in California, USA: Athena is 6 years old. She was diagnosed at the age of 5 when I requested genetic testing for her after speaking to her orthopedic surgeon. We kept thinking we were missing something. Something wasn’t adding up. Her ortho doctor and I decided that we should speak…
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KIF1A.ORG Newsletter – April 2025 Welcome Our New Executive Director, Dominique Lessard, Ph.D.! I’m thrilled to share exciting news about the leadership at KIF1A.ORG. Beginning April 14th, Dominique Lessard will officially step into the role of Executive Director, replacing myself, Angie Fuller. Dominique has been a dedicated force within our organization as our previous Chief…
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Dear KIF1A.ORG Community, This Friday, February 28th, we join the global community in honoring Rare Disease Day—a day dedicated to raising awareness and shining a light on the millions of people affected by rare diseases. Here at KIF1A.ORG, we’ve been gearing up all month, and the momentum is truly inspiring! Our Miles that Matter for…
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Dear KAND Community, This February, in honor of Rare Disease Day on 2/28, we have two important initiatives underway! Please read below to learn about our ASCEND survey completion challenge and our Miles That Matter for KIF1A campaign. These initiatives are critical to our community—driving research participation and raising awareness and funds to advance our…
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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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