Monthly Momentum- November 2021 Header
Hello Friends

Are you ready to translate hope into action? Join us TOMORROW for #GivingTuesday, a global movement of giving! Every donation goes directly to research to find treatments for KIF1A Associated Neurological Disorder. Check out November’s Monthly Momentum update to learn more about our progress thanks to your support.

Don’t forget! Meta (Facebook) will match $8 million USD in qualifying donations made on Facebook during #GivingTuesday. Matches are made on a first-come, first-served basis, so be ready to hit that donate button at 8:00 a.m. EDT on November 30th, no matter where you live! Share this movement across social media to help the KIF1A.ORG community reach new heights on #GivingTuesday.

Remember, every donation goes directly to research to find treatments for KIF1A Associated Neurological Disorder! KIF1A.ORG’s goal is to raise $50,000 USD this year. With your help, we can do it!

One thing to know about the KIF1A community is we don’t like to wait around for progress. We’ve already launched our #GivingTuesday fundraiser and between donations received on Facebook, Instagram, our website and even by mail, we’re already halfway to our goal!

$40,000 raised of our $50,000 Giving Tuesday goal!

Research Highlights

Meet the KIF1A Research Network

With this neurodegenerative disorder, every day matters. We have no time to waste working alone or in sequential order. By joining forces with KIF1A.ORG, the KIF1A Research Network is doing more—faster—to bring life-changing and life-saving treatments to KAND patients. Learn more about the scientific research we fund and other collaborations we’re driving to fast-track KAND treatments.

Grant Awarded for KIF1A Research

KIF1A Research Network members were awarded a $776,019 AUD grant by the Australian National Health and Medical Research Council to study epilepsy treatment for KIF1A Associated Neurological Disorder! We thank Dr. Simran Kaur, Dr. Wendy Gold, Professor John Christodoulou, Dr. Wendy Chung and Associate Professor Nicholas Williamson for their relentless, collaborative work to improve the lives of KIF1A superheroes everywhere.

Community Highlights

Epilepsy Webinar

In honor of National Epilepsy Awareness Month (NEAM) and National Family Caregivers Month (NFCM), Epilepsy Foundation is hosting a candid conversation with two extraordinary caregivers of persons touched by rare epilepsies. KIF1A.ORG founder and dad to KIF1A superhero Susannah, Luke Rosen, will be joining the conversation with Tonya Nash, a mother of a son diagnosed with Lennox-Gastaut syndrome, to share their families’ celebrations and challenges. The event is free, but advanced registration is required.

SAVE THE DATE: Community Call


Join KIF1A.ORG and our family community on January 22, 2022, at 3:30 PM Eastern Time (New York City) / 8:30 PM BST (London) / Sunday at 5:30 AM AEST (Melbourne)!

We will be having community calls on a quarterly basis to help keep up with all the activities and progress we’re making. Patients, parents, family members and caregivers are welcome! Contact us at for more information about how to join us!


Two quote bubbles feature the KIF1A.ES logo and "Hola!"

¡Presentamos KIF1A.ES! We are thrilled to announce the launch of KIF1A.ES, a member of the KIF1A.ORG family that will help drive collaboration, research and family support in Spain and across our Spanish-speaking community!

To keep up with the progress we’re making thanks to your support, sign up for our monthly newsletter and emails!

Whatever role you play in our community, we need you. Thank you for all that you do to help us realize our mission for KIF1A superheroes everywhere.

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