KIF4A-Related Disorder

03/01/2025

KIF4A Foundation is a 501(c)(3) nonprofit organization dedicated to raising awareness of KIF4A gene mutation, joining families affected by KIF4A, and accelerating research to find an effective treatment.

CashApp: $KIF4AFoundation
Venmo:

07/02/2024

Hello community, my name is Chris. My late wife Kelly created this page and organization a couple of years ago for our son Colton. She passed last July. So I have been extremely busy this past year. And we have had many people message us on here asking for information and other families that have the KIF4A-Related Disorder. So if anyone who has been affected by kif4a could you comment on here so others are reach out and ask questions. I will begin to post more often on here. And maybe organize an event so we can all meet one day.

One of our goals is establishing a patient database, which will document and track the way KIF4A presents in each individual.

We know that our kids are much more diverse than what is reflected in literature. Sometimes science just needs a little push!

07/12/2023

KIF4A kiddo, Thomas, is looking for a nurse in the Lilly, PA area! He’s a super sweet & cool guy with an amazing family. Any nurse would be lucky to have his assignment! If you can help, please reach out to their agency: Angels of Care Pediatric Home Health

♥️

Join our Lilly team as Thomas' nurse! Thomas is a blind and deaf teen looking for a dependable nurse to care for him in his home. He loves swinging, rocking, jumping, spinning, and sharing candy! Thomas has epilepsy and can receive care from an RN or LPN.

Shifts available:
Mon-Fri: 7:15a-4:15p
Sun: 11p-7a

APPLY NOW: https://forms.office.com/r/2jN2W4A8HZ
To discuss this opportunity, you can reach out to our Recruiting team at 844-38-HALOS or send us a message!

07/07/2023

A rare disease advocacy council is coming to Delaware and KIF4A Foundation intends to get involved! This is exciting news, ya’ll!

If SB 55 is passed, Delaware will be the 25th state to establish a Rare Disease Advisory Council.

02/11/2023

February 28th is rare disease day! Help us celebrate by wearing your KIF4A gear, or our colors, navy blue and green! 💙💚

02/02/2023

🎉 Rare Disease Awareness Month 2023 is upon us!

📣 Join us this month to raise awareness for the 300 million people living with a rare disease worldwide!

⚖️ By coming together to advocate for change, we can achieve equitable social opportunity, healthcare, and access to diagnosis for people living with a rare disease.

👉 Find out how you can get involved: https://cutt.ly/w9tI5Pb

11/26/2022

One of our goals is establishing a patient database, which will document and track the way KIF4A presents in each individual.

We know that our kids are much more diverse than what is reflected in literature. Sometimes science just needs a little push!

11/26/2022

There’s a fundamental truth that gives us hope – that together we can do extraordinary things. Join us on next Tuesday, November 29th, and help us get closer to our goal: RESEARCH of KIF4A and RESOURCES for families.

Be a hero to a child affected by KIF4A this year 💙

Together we can!

11/18/2022

09/21/2022

New look, same mission ♥️💪🏼