The community call with Dr. Chung from BCH and Dr. Glass from n-Lorem is available! Watch this hour long video to learn the most up-to-date information about KAND natural history studies (ASCEND & KOALA), blood specimen collection, and potential ASO treatment with n-Lorem. Hear directly from these expert clinician researchers and scientists themselves!
With hope,
KIF1A.ORG
The KIF1A.ORG community was recently featured in “The Gene: An Intimate History”, a film about how scientists, doctors and patients are unlocking the power of science to diagnose and treat genetic diseases. Now more than ever, our world is looking to pioneers and innovators to accelerate scientific breakthroughs that will improve and save lives. Part One of The Gene highlights the relentless KIF1A.ORG community and our mission to find a cure for KAND. Visit our webpage to see a few exclusive clips!
April 28th is KIF1A Day! Join us in celebration! Topics include: Donate to our TAP Fundraiser in honor of KIF1A Day. ASCEND Enrollment Lagging We need ALL KAND warriors enrolled ASCEND is our Natural History Study. The goal is to: This is all online. It takes 2-6 hours of your time. Translation is available through…
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Link to Inside Edition 10 minute interview with Amanda and Emma. By ANDREA SWINDALL, First Published: 8:34 AM PDT, April 6, 2024 KIF1A Associated Neurological Disorder is a rare severe neurodegenerative disease caused by mutations in the KIF1A gene, Amanda Burrett says. Only about 550 known families have been affected. Amanda Burritt’s daughter Emma is living with…
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