The human brain is an invaluable resource for advancing knowledge of the FOXG1 gene and identifying treatments that can help improve the quality of life for individuals with FOXG1 syndrome.

We have partnered with Autism BrainNet, a Simons Foundation initiative that promotes research on donated brain tissue to improve the understanding of autism-related neurodevelopmental conditions like FOXG1 syndrome. Read more here about the importance of studying donated brain tissue.

Please print this Donor Card or take a screen shot and tuck it away in a file. It is recommended to share it with the hospital upon any admissions.

There is only a 24-hour window for a successful collection.

We partnered with Autism BrainNet because:

* They have the most cutting-edge program for brain tissue research.

* They work with researchers from all over the world.

* Autism BrainNet has centers in USA, Canada, and the UK.

* They make the process as simple and compassionate as possible for every family.

* There is no cost for families.

* Applications to receive brain tissue for research are evaluated for scientific merit by the Autism BrainNet Scientific Review Committee, a group of highly respected physicians and scientists.

We are beyond grateful to anyone who helps contribute to research.

We will continue to work as hard as possible to find precision treatments to help every child and adult in the world with FOXG1 syndrome.

Our goal is that nobody needs this!

Intent to Donate Postmortem Brain Tissue for Research Form
You can communicate to others your intent to donate your or your loved one’s postmortem brain tissue by sharing the Intent to Donate Form with your family members. You can also include this form in preplanning documents or healthcare directives, or provide it to the funeral home. This form only indicates your intent to donate; it is not a binding commitment to become a donor.

Your family can help carry out your decision by calling Autism BrainNet. When a death has occurred, the family or health care provider should call Autism BrainNet at 877-333-0999 within 24 hours for immediate assistance. If death is near, you can call Autism BrainNet to make plans for donation. Our staff is available 24/7 and will walk your family through the donation process. 

For more information about the donation process, call Autism BrainNet at 877-333-0999 or email [email protected].

Learn more about Autism BrainNet and the Rare Disease patient organization partners.