We provide a variety of support and resources for our families, from an online community of parents to connect with to accurate information that you can pass along to your doctors.

If you’re connecting with KIF1A.ORG for the first time, we invite you to complete the form on the Newly Diagnosed page. From there, we’ll be in touch with additional resources and support for you to learn more about the disorder, our community and be able to ask questions or share advice on what’s worked well for your family.

Frequently Asked Questions

Have a question about KIF1A-Associated Neurological Disorder? Find answers to Frequently Asked Questions (FAQs) here.

Private Support Group

Request to join our private Facebook group, full of other families caring for or affected by KIF1A-Associated Neurological Disorder (KAND).

2019 KAND Conference

KIF1A.ORG hosted the largest gathering of KIF1A families, researchers, clinicians and supporters at the KAND Family & Scientific Engagement Conference on August 16–17, 2019, at Columbia University in New York City.

We believe in making the latest KIF1A research and data freely and easily accessible. Visit the conference page to access recordings of the sessions, presentation slides, handouts and group notes captured during the conference.

What Is KIF1A?

A KIF1A diagnosis can be scary, stressful and confusing. You’ve likely entered a whole new world of medical jargon and uncertainty. Complex scientific explanations about KIF1A rarely help families living with this diagnosis. We’re here to help.

KIF1A.ORG teamed up with KIF1A Research Team member Dominique Lessard to create this family-friendly resource to help you understand the basic science behind KIF1A.


Here’s a handout you can post online or print to spread the word about KIF1A.ORG and our mission. We can tailor this flyer with your KIF1A warrior’s name and photo. Email us at impact@kif1a.org and we’ll send you a personalized flyer.

KIF1A Glossary

This resource is designed to help KIF1A families understand scientific and clinical terms you might encounter in research or other scientific communication.

2017 Family Meeting Presentation

Download the presentation from our first family meeting. It includes an overview of genetics, the KIF1A gene and variants, and research studies looking into symptoms of the disorder.

Coping Space

KIF1A.ORG is grateful for our partnership with Ryan’s Case for Smiles, a volunteer organization solely dedicated to helping kids feel better to heal better. They created CopingSpace, an online resource and support site offering coping strategies and tips related to a child’s life-changing illness or injury.

School Resources

Download this template to create your own “Back to School” handout to help teachers, therapists and caregivers learn about your KIF1A kid’s strengths, interests and goals.

From the Epilepsy Foundation, here’s a Seizure Action Plan template you can use at school and possibly other settings.

A Note to Siblings

This resource was made to help siblings of KAND patients and their parents understand KAND and how it might impact siblings. Some parents may decide to share this resource with KAND siblings, while others might borrow language or ideas from this resource to support their own conversation with KAND siblings. This resource is intended to serve pre-teens and teens, but parents should use their own judgement when deciding what information to share and how it might be best to discuss KAND in their specific situation.

KIF1A.ORG Brochure

Download this overview to share with people who want to learn more about KAND and our mission at KIF1A.ORG. We thank Finlay Pilcher and the team at Berger Lab at University of Vermont for contributing to this resource.

Additional Resources