We have exciting and important news for FOXG1 Families:
The US National Institute of General Medical Sciences (NIGMS) has started a global FOXG1 patient biobank! They are accepting skin biopsies and blood samples. This will enable scientists to access samples for research (anonymously).
How it works: The samples will be turned into fibroblasts. Researchers can then access these fibroblasts and turn them into pluripotent stem cells. Basically that means a skin cell can turn into a brain cell. Scientists can then do experiments on these cells, like testing drugs and gene therapies to see if symptoms go away. Also these cells are used to learn more how each mutation affects the body. FOXG1 Research Blackswan Foundation will be initiating/funding a study of a large group of biopsies towards the end of 2018, and all participating families will gain in-depth information about their child, how your child's biology is affected by his/her mutation.
NIGMS employs the highest caliber standards and most biotech companies won’t look into a disease unless fibroblasts are available within their Biobank. Once your child’s sample is in the biobank, a number will be given that can connect to your child’s Natural History Study
Please enter your information here: https://www.foxg1research.org/child/
We will contact you with next steps and more information. NIGMS has prepared a kit for your doctor to use.
This is a big step for the entire FOXG1 community!! We thank NIGMS for giving us this opportunity!