The Year in Review: 2020 Impact

The Year in Review: 2020 Impact

Another year has come and gone, and despite the changes and challenges that this year brought for many, the KIF1A.ORG community continued to experience exponential growth thanks to people like you. Real growth. Tangible growth. Growth that will allow THIS generation of individuals living with KIF1A Associated Neurological Disorder (KAND) to realize dreams, gain independence…

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#ScienceSaturday: December 19, 2020

#ScienceSaturday: December 19, 2020

#ScienceSaturday posts share relevant and exciting scientific news with the KAND community. This project is a collaboration between KIF1A.ORG’s Research Engagement Team Leader Alejandro Doval, President Kathryn Atchley, Science Communication Associate Aileen Lam and Chief Science Officer Dr. Dominique Lessard. Send news suggestions to our team at impact@kif1a.org.

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Coping and Family Box Project

Coping and Family Box Project

KIF1A.ORG introduces a new program to bring support and comfort to KIF1A superheroes undergoing a medical procedure or recovering from an injury. Read on to learn more about this new resource made possible by a partnership with Ryan’s Case for Smiles and Phillies Charities, Inc.

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#ScienceSaturday: December 12, 2020

#ScienceSaturday: December 12, 2020

#ScienceSaturday posts share relevant and exciting scientific news with the KAND community. This project is a collaboration between KIF1A.ORG’s Research Engagement Team Leader Alejandro Doval, President Kathryn Atchley, Science Communication Associate Aileen Lam and Chief Science Officer Dr. Dominique Lessard. Send news suggestions to our team at impact@kif1a.org.

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#ScienceSaturday: December 5, 2020

#ScienceSaturday: December 5, 2020

#ScienceSaturday posts share relevant and exciting scientific news with the KAND community. This project is a collaboration between KIF1A.ORG’s Research Engagement Team Leader Alejandro Doval, President Kathryn Atchley, Science Communication Associate Aileen Lam and Chief Science Officer Dr. Dominique Lessard. Send news suggestions to our team at impact@kif1a.org.

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KIF1A.ORG Accelerates KAND Research at Christodoulou Lab

KIF1A.ORG Accelerates KAND Research at Christodoulou Lab

KIF1A.ORG Community, What if KIF1A treatment already existed? It could be on the shelves of your local pharmacy, or a drug created for a related disease like Parkinson’s or epilepsy. Are there FDA-approved treatments for other conditions that could bring relief to KAND patients living with progressive spasticity, uncontrolled seizures or painful neuropathy? We won’t…

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#ScienceSaturday: November 21, 2020

#ScienceSaturday: November 21, 2020

#ScienceSaturday posts share relevant and exciting scientific news with the KAND community. This project is a collaboration between KIF1A.ORG’s Research Engagement Team Leader Alejandro Doval, President Kathryn Atchley, Science Communication Associate Aileen Lam and Chief Science Officer Dr. Dominique Lessard. Send news suggestions to our team at impact@kif1a.org.

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KIF1A.ORG Accelerates KAND Research with AMRI

KIF1A.ORG Accelerates KAND Research with AMRI

KIF1A.ORG Community, Today we’re highlighting the exciting work we’re doing with Albany Molecular Research Inc. (AMRI) to support KIF1A.ORG’s therapeutic development efforts. This project was made possible by a Rising Tides grant awarded by The Child Neurology Foundation to support organizations during the COVID-19 pandemic.

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#ScienceSaturday: November 14, 2020

#ScienceSaturday: November 14, 2020

#ScienceSaturday posts share relevant and exciting scientific news with the KAND community. This project is a collaboration between KIF1A.ORG’s Research Engagement Team Leader Alejandro Doval, President Kathryn Atchley and Chief Science Officer Dr. Dominique Lessard. Send news suggestions to our team at impact@kif1a.org.

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The Firestorm of Rare Epilepsy: Our Girl’s Dreamless Nights

The Firestorm of Rare Epilepsy: Our Girl’s Dreamless Nights

By Luke Rosen Susannah does not wear pajamas to bed, she wears battle gear. After her bath is finished, teeth brushed, stories read and songs sang, it is time for the grueling marathon that is Susannah’s rare, nocturnal epilepsy. Her nine-year-old brother, Nat, flies into the bedroom like Superman and hugs her tight. “Night Shasha!”…

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