Updates from KIF1A.ORG November 2025 is almost done and we have a lot to be thankful for, as always! Read on below to learn more about what’s been happening at KIF1A.ORG: Coming in 2026: KIF1A Center of Excellence! 🗣️ We are beyond thrilled to share the news that Boston Children’s Hospital will launch a KIF1A…
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Updates from KIF1A.ORG Another month of 2025 has flown by before our eyes! What have we been up to? Read on below to learn more about: KIF1A Virtual Hill Days Were A Success! Last week, we launched our inaugural KIF1A Virtual Hill Days event by bringing patient perspectives directly to the hearts of United States…
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Updates from KIF1A.ORG While summer may be winding down in the Northern hemisphere, we are revving up to finish out 2025. Read on below to learn more about: KIF1A Virtual Hill Day – Advocacy Opportunity for KIF1A Community! We are seeking US-based volunteers interested in participating in a virtual “KIF1A hill day” during the week…
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Updates from KIF1A.ORG July was an unforgettable month for the KIF1A.ORG community! We had an incredible time connecting, learning, and growing together at the 2025 KAND Family & Scientific Engagement Conference. Thank you to every family, researcher, clinician, and supporter who made this event such a success. If you couldn’t join us—or if you just…
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Dear KIF1A.ORG Community, As the middle of the year rolls in, we’re filled with excitement and anticipation for our upcoming KAND Family & Scientific Engagement Conference happening July 25–26, 2025 in Boston, Massachusetts! This event is one of our most important opportunities to bring together patients, families, researchers, clinicians, and advocates—all united in our mission…
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KIF1A.ORG Newsletter – May 2025 Dear KIF1A.ORG Community, It has been almost four weeks since I started assimilating into the role of KIF1A.ORG’s new Executive Director and, WOW, what a four weeks it has been. From connecting with community members, to learning about our ongoing and upcoming projects, I am filled with excitement about everything…
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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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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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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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