About Alex Manfull’s Brain

When Alex died, her parents were asked by the Human Brain Collection Core (HBCC), a brain bank held by the National Institute of Mental Health (NIMH) Brain, if they would be willing to donate her brain to further research on PANDAS/PANS. A difficult decision had to be made quickly but they knew it was what Alex would have wanted as she was very committed to furthering awareness and education about this insidious disease called PANDAS. In August 2018, the time the decision was made to donate Alex’s brain to NIMH, hers was the only known brain diagnosed with PANDAS in the US and, likely, in the world.

The Lab of Pathology at National Institutes of Health (NIH) provided a “Final Anatomic Diagnosis” of Alex’s brain which revealed damage in the basal ganglia region of her brain. Specifically, there was gliosis of the caudate nucleus and the thalamus. A review of this report by outside experts in neurology, psychiatry, and neuroscience confirmed that studying her brain tissue would very likely advance the understanding of neuroimmune disorders such as PANDAS and PANS.

When the Manfulls discovered that Alex’s brain was sitting in obscurity in the HBCC at NIMH and learned that there was no effort to promote the existence of this important brain tissue to researchers investigating neuroimmune disorders, they met with the Acting Director of HBCC and another psychiatrist and, making no headway, made the difficult decision to transfer her brain to another brain bank. They chose to move their daughter’s brain to the Georgetown Brain Bank under the stewardship of Brent Harris, MD, PhD. A Biospecimen Use Committee, composed of highly respected researchers and clinicians from the fields of psychiatry, neurology, and neuroscience, was established to review requests of tissue for research and to facilitate the transfer of that material.