About Us
"Care before the cure."
Fighting everyday for our warriors.
KIF1A
Welcome
KIF1A.ORG is a global community dedicated to improving the lives of those affected by KIF1A Associated Neurological Disorder and accelerating research to find a cure.
Our Story
Kirt the Warrior
Kirt was diagnosed in August of 2022. Leading up to the diagnosis, Kirt was diagnosed with Autism at 2 years old after he had an anaphylactic reaction to a monster cookie. From that point, we went to an allergist to check to see if he had any other food allergies. Kirt had a lactose intolerance to dairy and gluten. He was gluten & dairy free for almost 10 years. It was discussed if genetic testing would be beneficial, and we concluded for the cost and severity of the symptoms it was not needed.
From early on, he had shoe inserts to help with his knock-kneed issues and high arches. Around 14 years old, due to excessive falling and unnatural posture and walking gait, we scheduled with the neurologist to run some tests on him. Dr. mentioned Muscular Dystrophy while we were in the appointment, and we were devastated. Through more Dr.'s appointments and tests, genetic testing -the results came back in 3 months with an ultra-rare genetic disorder known as KIF1A. Google offered very little comfort and really the only thing we could gather from doctors was that they didn't know and there was nothing to do other than go to Physical Therapy and wait for it to get worse.
Thankfully, we found that a group of families had already laid the foundation of an organization and was working diligently to find an answer to KIF1A. The small group has raised over a million dollars for many parts that are needed, the one very important is breeding mice that have the KIF1A gene disrupted to reflect what is happening to our young people. There are 700 known cases of KIF1A worldwide.
We would love to have your support to fight for all the KIF1A warriors!!