WHERE THE MONEY IS GOING

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.

WHAT IS 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​​

OUR STORY: KIF1A.ORG, INC.

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.