It is with great enthusiasm that we announce a significant next step in our long-term partnership with the Chung Lab at Boston Children’s Hospital (BCH). In 2026, KIF1A.ORG will proudly contribute $250,000 USD to support the continuation of KIF1A clinical research in the Chung Lab. Our contribution to the Chung Lab represents a longstanding partnership…
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It’s KIF1A Day! Every April 28th, we come together to honor our community on KIF1A Day—a day to celebrate our incredible patients and raise urgent awareness for KIF1A-Associated Neurological Disorder (KAND) and the critical need for treatments and a cure. KIF1A Day is not only a moment of reflection and recognition, but a powerful call to action: to raise…
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What does Policy and Advocacy look like in our KIF1A community? It means advocating for treatment development, improving access to care, federal funding, and healthcare services. It means engaging patients and families in legislative discussions and regulatory initiatives. It means empowering and shining a light on patient voices and experiences. We are a community of…
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Authored by KIF1A.ORG Volunteer Roberto Ogelman, PhD Heterogeneity in research When we talk about KIF1A-associated neurological disorder (KAND), it can be tempting to think of as a single condition with a single cause. But in reality, KAND is caused by a spectrum of changes, or mutations, to the KIF1A gene. These different mutations can lead…
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Executive Summary In 2025, KIF1A.ORG continued its critical mission to accelerate research, strengthen a global community, and empower individuals and families affected by KIF1A-Associated Neurological Disorder (KAND) and KIF1A mutations. As a patient- and family-led nonprofit, we bridge the gap between families, scientists, clinicians, and advocates—driving patient-centered initiatives that advanced research, improved care infrastructure, and…
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Grace, born on July 4th, is our beautiful little firecracker with a spirit that shines in its own quiet but powerful way. From early on, we sensed that something wasn’t quite right. What began as a mother’s instinct led us down a long road of appointments, therapies, and testing. At just under two years old,…
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Updates from KIF1A.ORG Happy March from KIF1A.ORG! Thank you all for reading about what we’ve been up to this month, including: Before you dive into March Monthly Momentum, please enjoy a new educational video for our community, made possible by our compassionate advocates and partners at Advarra. Welcome Our New Director of Development, Marcy Rubic!…
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Jeremiah was diagnosed with KIF1A Associated Neurological Disorder (KAND) in 2022 after multiple surgeries and several medical providers recommended genetic testing. To those who know and love him, Jeremiah is best known for his sense of humor, his prankster personality, and his love of good music and good food. He has a way of keeping…
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Updates From KIF1A.ORG Happy Rare Disease Day from all of us at KIF1A.ORG! Today, 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 building!…
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Updates From KIF1A.ORG Happy New Year from all of us at KIF1A.ORG! Our first month of 2026 has been as busy as ever as we look forward to another great year. Thank you for reading as we share what we’ve been up to this month, including: Welcome Our New Fundraising Coordinator, Erin Zaranec! We are…
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Updates from KIF1A.ORG What have we been working on during the last month of 2025? Read on below to learn more about what’s been happening at KIF1A.ORG: 2026 KIF1A Community Clinician Survey is LIVE! We are excited to launch our new 2026 KIF1A Community Clinician Survey! This survey is for families to provide information on…
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