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 Family Resource Page
Review meeting summaries, recordings of important calls, and access additional resources created for the KIF1A family community on our password protected family resource page. The password will be shared after submitting a newly diagnosed form.
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.
This resource is designed to help KIF1A families understand scientific and clinical terms you might encounter in research or other scientific communication.
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.
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.
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 Warrior Flyer
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 firstname.lastname@example.org and we’ll send you a personalized flyer.
The Selfless Gift of Brain Donation
Through a partnership between KIF1A.ORG and Autism BrainNet, a compassionate process has been established for KAND families who would like to advance research through the gift of a brain donation, should their loved one pass away. Though this is a deeply saddening topic to approach with our KAND community, it is important to note that this does not indicate your loved one(s) could pass away from an early death caused by KAND or any other condition. It is best to approach these decisions in advance, regardless of the severity of KAND, instead of during the worst moment in time. This allows your family to be prepared to make this decision if such an unexpected or tragic situation were to occur. This partnership allows families to fulfill their wishes with compassionate support. Please visit our page to learn more.
- The Compassionate Friends — provides highly personal comfort, hope, and support to every family experiencing the death of a son or a daughter, a brother or a sister, or a grandchild, and helps others better assist the grieving family
- The Mighty — an online community where those facing health challenges can connect with others in similar situations and get support
- Rare Genomes Project — works to advance genome sequencing technology and offer that technology to every rare and undiagnosed family
- ClinVar — Aggregate information about genomic variation and its relationship to human health
- National Center for Biotechnology Information (NCBI) — Review their summary of KIF1A and explanation of gene mutations
- PubMed — Find published studies about the KIF1A gene and mutations
- Decipher — Aggregate data involving KIF1A research studies
- Discover Program — Columbia University initiative to provide complicated or difficult diagnoses to families
- Genetic and Rare Diseases Information Center — Specialists available to answer questions in both English and Spanish
- OMIM — Descriptions and explanations of kinesins and the KIF1A gene
- GeneCards — Summaries and information on the KIF1A gene
- UniProt — Information on KIF1A molecular function and biological process
Community suggested products
- Huckleberry Hiking – “Whether you have one who needs your legs, two in tow, or three miles with a heavy load, we aim to provide innovative products that break through mobility barriers and enable togetherness and wellness in outdoor adventure.” – From Huckleberry Hiking website