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), if they would be willing to donate her brain to advance 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 post-mortem 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.
To more actively promote the existence of this valuable brain tissue to researchers, the Manfulls made the decision to transfer their daughter’s brain from the HBCC 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 neurology, psychiatry, rheumatology, and neuroscience, was established to review requests of tissue for research and to facilitate the transfer of that material to researchers. In January 2022, having received additional brain tissue from another donor, the PANDAS/PANS and Other Neuroimmune Disorders (POND) Brain Bank was established within the Georgetown Brain Bank.
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), if they would be willing to donate her brain to advance 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 post-mortem 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.
To more actively promote the existence of this valuable brain tissue to researchers, the Manfulls made the decision to transfer their daughter’s brain from the HBCC 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 neurology, psychiatry, rheumatology, and neuroscience, was established to review requests of tissue for research and to facilitate the transfer of that material to researchers. In January 2022, having received additional brain tissue from another donor, the PANDAS/PANS and Other Neuroimmune Disorders (POND) Brain Bank was established within the Georgetown Brain Bank.