September Monthly Momentum Featured Image
Hello Friends

Are you ready for this month’s recap and a sneak peek look into what’s happening next for the KIF1A.ORG community? Get the latest RIGHT HERE in this Monthly Momentum update.

We’re now recruiting for a full-time Research Engagement Director. If you have scientific, research and/or communications experience and you want to join a community of people driving progress against neurodegenerative disease, check out the job description!

Research Highlights


#ScienceSaturday posts are available to share relevant and exciting scientific news with the KAND community. If you’d like to stay informed about the latest KIF1A research and other interesting news happening within the science and rare disease worlds, check out our blog each week.

In Case You Missed It: Treatment Accelerator Program Update

Please help us welcome the newest partner in our mission to cure KIF1A Associated Neurological Disorder! This collaboration will make significant leaps in our understanding of KAND and drug discovery capabilities. Click the button below for more information about what this means for our Treatment Accelerator Program!

“NeuCyte is committed to applying our powerful technology platform and know-how to developing breakthrough therapies for patients. We are honored to be a member of the KIF1A.ORG community and looking forward to contributing our best to understanding and curing KAND.” — Tao Huang, PhD, JD, President and Chief Executive Officer of NeuCyte

Community Highlights

#GivingTuesday 2021

Are you ready to translate hope into action? Join us this year for #GivingTuesday, a global movement of giving on November 30, 2021! Be sure to mark your calendars and share this movement across social media to help the KIF1A.ORG community reach new heights on #GivingTuesday. Donations made through Facebook on November 30th could even be matched!

Community Calls

If you missed September’s Family Community Call, have no fear! We’ll start these 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! View notes from the September Community Call here.


If you have enrolled in the Natural History Study with Chung Lab at Columbia University for more than 6 months, you should have received an email to complete the annual follow-up survey. This study is one of the most critical tools families can provide to researchers and pharmaceutical companies who are working to improve care guidelines and discover treatment. The annual survey also allows researchers to study how KAND changes over time and better understand which symptoms might develop, worsen, or remain stable with age. If you believe you have not received this email in error, please reach out to us at, and we will connect you with Chung Lab.

Cones for Colbie

Colbie’s family worked with their local Dairy Queen to host a “Cones for Colbie” fundraiser benefiting KIF1A.ORG. Thank you for your efforts to advance our mission!

Cookies, Cider, Treats & Cheers For KIF1A Research

Team Anderson hosted a bake sale fundraiser benefiting KIF1A.ORG during their neighborhood’s community yard sale. Thank you for your energy, excitement and support!

“Une Vie Fretless” or “A Fretless Life” by Anouk Lanouette Turgeon

A remarkable mother from the KIF1A community and gifted writer, Anouk Lanouette Turgeon, published her first book, “Une Vie Fretless” or “A Fretless Life.” It’s sure to resonate with rare parents everywhere, and open the minds of those who have not been touched by rare disease or disability. This masterpiece is written in French, and we hope to see it translated into many languages soon. Congratulations, Anouk!

“Offers a lesson in self-acceptance, rather than personal growth, and confronts our conceptions of marginalization and our relationship to difference. The protagonist, a mother of two disabled children, makes us question our own judgment of atypically developing children and how society is ill-equipped to welcome them.” Learn more at Une vie fretless ou comment j’ai accouché d’une méduse par Anouk Lanouette Turgeon | Littérature | Roman québécois |

New Resource: Facts About Health Conditions Caused by Changes in the KIF1A Gene

Recently, Dr. Simran Kaur collaborated with a team of fellow KIF1A Research Network members to publish a fact sheet containing information about the possible impact of a variant in the KIF1A gene on children and families through the NSW Centre for Genetics Education in Australia. This publication is full of wonderfully curated information, including facts about the KIF1A gene, what a change in the KIF1A gene could mean for an individual, suggestions for symptom management, and more! Additionally, for our Australian families and advocates this publication includes location-specific resources centered around support, advocacy, and care needs. 

KIF1A in the News

Thank you to these relentless KIF1A families for sharing your stories to advocate on behalf of the entire KIF1A community!

Team Ethan shares their story of their son’s KIF1A journey with their local 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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