A cure for our children now exists based on gene therapy (FRF-001). It was developed in a laboratory in the United States, privately funded by parents and investors from around the world. This gene therapy will enable our children affected by FOXG1 syndrome to improve their quality of life, correct their brain malformations, and begin to reach developmental milestones like other children: walking, talking, etc. Will you help us raise funds?
FOXG1 syndrome is a rare neurological disorder that affects brain development. Most children born with FOXG1 syndrome do not speak, have severe physical and cognitive disabilities, experience intractable seizures, respiratory distress, impaired visual perception, feeding difficulties, reflux, movement disorders, and more. Currently, there are 36 children in Spain, and it is estimated that nearly 1,000 children worldwide are affected by this rare disease, although the diagnosis rate is steadily increasing year after year. But there is hope: we are working to make gene therapy accessible to all children with FOXG1 syndrome through a global effort led by parents to raise the funds needed to begin clinical trials. These patient trials will begin in early 2026, bringing the first treatment for FOXG1 syndrome to children around the world. Will you help us make this possible?
Posted on
10/03/2026
More information
See Document
Website:
https://foxg1espana.wordpress.com/
Publication date
04/02/2022
Created by
Asociación FoxG1 España
Type of Group
Non-profit
Field
Disabilities
Patient care
Research
Country
Spain
Region
Madrid