Kathryn Atchley's Fundraiser

For Team Parker, a team supporting:

Cure KIF1A Today











days left

My son Parker was diagnosed with KIF1A-Related Disorder in January 2017. At four years old, Parker cannot walk or stand unassisted. He speaks in one or two word phrases. He is full of life and love and infectious giggles. I won't stand by and let KIF1A rob Parker of a bright future ahead. But I can't do it alone. Join me in fighting for a cure for Parker and his KIF1A buddies! #TeamParker #TeamKIF1A

About this Campaign

Cure KIF1A Today

Join our mission to relentlessly fund research leading to a cure for every child living with KIF1A Disorder. Every second matters, we need your help today.


All donations are tax deductible and go to KIF1A.ORG, a patient-led nonprofit 501c3 (Tax ID: 82-0714729) that supports KIF1A research at the Chung Laboratory at Columbia University Medical Center. 100% of the funds benefit this vital research needed to find treatment for children living with KIF1A.


KIF1A Disorder is a very rare and degenerative neurological disease affecting children born with a mutation in the KIF1A gene. Researchers and physicians at Columbia University Medical Center are relentlessly working to discover treatment for every child living with KIF1A. We have an urgent need to accelerate this research, and your donation today drives us closer to a cure.

Fewer than 100 children throughout the world are reported to have KIF1A. There is no cure or treatment. Yet. 

With your support, we will continue to fund intense clinical research to  discover a cure for every child living with KIF1A. Waiting is not an option for KIF1A kids, we need your help today.

Mutations in KIF1A cause the following disorders: 

• Cognitive impairment

• Cerebellar atrophy

• Ataxia

• Spastic paraplegia

• Optic nerve atrophy

• Peripheral neuropathy 

• Epilepsy​​


In August 2016, Luke Rosen and Sally Jackson's two-year old daughter, Susannah, was diagnosed with a rare, neurological disease called KIF1A Disorder. When doctors told them no cure or treatment exists for this progressive disorder, Luke and Sally had to act fast. KIF1A.ORG began in October 2016 and works relentlessly to discover treatment for children diagnosed with KIF1A Disorder.

KIF1A.ORG's mission is to locate other patients and urgently raise money to fund research leading to treatment for KIF1A Kids. Gene therapy and drug development are within reach, but there are two things preventing us from finding that cure: time and money.

There is no time to wait, we need to find treatment today. With your support we can make that happen.

Share this Fundraiser!

About the Organization

KIF1A Associated Neurological Disorder is an extremely rare disease affecting fewer than 200 children throughout the world. A rare mutation of the KIF1A gene causes a degenerative neurological syndrome with a progressive course. There is no cure or treatment. Yet.

We are urgently raising funds to support KIF1A research at Columbia University Medical Center's Discover Program. The window of opportunity to help kids with KIF1A is not a big one, every single day matters. With your help we will fund innovative research leading to treatment for every child living with KIF1A. Waiting is not an option for KIF1A kids, we need your help today.

With guidance from physicians specializing in genetics and neurology, we are funding research leading to clinical trials, treatment, and eventually a cure for KIF1A Disorder. Our goal is very possible. Thank you for helping us cure KIF1A.