Fort Collins family seeks to raise $1M to research rare genetic disorder

FORT COLLINS — A Fort Collins family has teamed up with a small group of parents to raise funds for research and development of a gene-therapy treatment for FRRS1L gene disorder. FRRS1L is a protein-coding gene that affects the messaging between cells in the brain and results in regression and loss of function in children. 

The FRRS1L gene disorder, which takes full effect in children around age 2, results in seizures that cause regression in the child. Within months, or even weeks, children lose their ability to move, speak, feed orally, and control their heads and their bodies. 

Green moved her family to Fort Collins just more than a year ago to access medical facilities and family support in Colorado. Everly is being treated by Dr. Amy Bailey of The Youth Clinic.

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An estimated $400,000 will fund the pre-clinical research required to develop treatment. Then the group will pursue U.S. Food and Drug Administration approval to begin clinical trials of FRRS1L gene-replacement therapy, at which point additional donations and funding sources may be used for the higher cost of trials. 

The online fundraiser, Finding Hope for FRRS1L, has received more than 650 donations and has raised almost 38% of its goal.