Two year old Caleb is one of approximately 850 people worldwide who have been diagnosed with a very rare neurological disorder called FOXG1 syndrome. He has severe global delays, cannot roll or sit, suffers from epilepsy, is fed through a G tube, and is nonverbal. However, he is incredibly sweet and lights up the room with his smiles and giggles.
FOXG1 syndrome is caused by a mutation in the Foxg1 gene, which is one of the first and most critical genes in brain development. Like a domino effect, a mutation to the Foxg1 gene greatly disrupts overall development. While FOXG1 syndrome is a rare disorder, scientists believe the gene holds the key to help unlock answers about other brain disorders affecting millions, including Alzheimer’s, autism, schizophrenia, and brain cancers.
The FOXG1 Research Foundation is working hard to find a cure for Caleb and all our beautiful children. We have funded the development of animal and stem cell models and are successfully moving along our planned “path to a cure” with the hope of getting to human clinical trials for drugs and gene therapies in the coming years. We will leave no stone unturned to give our “foxes” the best quality of life they deserve.
