When Alex died in August 2018, 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. At the time Alex’s brain was donated 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 the 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.
What does POND mean?
POND is the acronym for “PANDAS/PANS and Other Neuroimmune Disorders.”
About the POND Brain Bank
In January 2022, the POND Brain Bank was established within the Georgetown Brain Bank. It is the world’s only repository solely dedicated to brain tissue from donors diagnosed with “PANDAS/PANS and other Neuroimmune Disorders.” The Alex Manfull Fund (TAMF) was instrumental in establishing POND Brain Bank so that brain tissue would be available for research that will advance clinical understanding of these disorders, ultimately benefiting patients and their families. TAMF believes that by supporting basic research, its vision will be realized that no life will ever again be cut short – or interrupted for years – by these infection-associated neuroimmune disorders.
Brent Harris, MD, PhD, Director of Neuropathology, oversees POND Brain Bank. Requests of tissue for research are reviewed by a Biospecimen Use Committee composed of highly respected researchers and clinicians fromthe fields of neurology, psychiatry, rheumatology, and neuroscience.
Why is brain donation important?
Brain tissue enables the brain to be examined at the molecular and cellular level. Your postmortem tissue samples allow researchers to “see” what cannot otherwise be seen with any of the scientific tools currently available to study the underlying biopathology of these disorders.
PANDAS/PANS and other neuroimmune disorders are brain disorders. They are likely triggered by infections, metabolic disturbances, and other inflammatory reactions which, in some people, appear to cause the immune system to dysregulate and eventually impact the brain in ways that can have debilitating and even fatal consequences. And yet, it is not clear exactly what the underlying mechanisms are that lead to the symptoms associated with these disorders.
Brain donations provide researchers with an opportunity to expand their understanding about the underlying mechanisms of PANDAS/PANS so that more options for effective treatment and, ideally, prevention can be found.
A single brain donation offers valuable information to hundreds of research studies. Donations give hope to those in the fight against PANDAS/PANS and other related neuroimmune disorders.
How does one arrange a brain donation?
POND Brain Bank seeks brains from people who have been diagnosed with “PANDAS/PANS or Other Neuroimmune Disorders,” as well as those without neurological disease. (Healthy brain tissue is essential for comparison purposes in research.) For individuals interested in making provisions in their living wills for such a donation, please contact your attorney for guidance.
If a loved one who was diagnosed with PANDAS/PANS has died and you would like to learn more about donating his or her brain for research, please contact us as soon as possible after death. Brain tissue is most beneficial soon after a loved one’s passing.
We understand contacting the Brain Bank may occur during a very difficult time, but POND Brain Bank is available to assist with the process of making this important donation.
Our Neurology Brain Bank Coordinator, Ms. Marina Selenica, can be contacted for information and forms to review (ms4739@georgetown.edu or 202-687-4466). If you email or call outside of working hours, please leave a message and we will respond within approximately 24 hours.
Dr. Harris, Georgetown Brain Bank Director (bth@georgetown.edu), and Dr. Galam Khan, Georgetown Brain Bank Assistant Director (gak2@georgetown.edu), are also available to answer questions and discuss the process.
Dr. Brent Harris, Georgetown Brain Bank Director
Family: FAQs
What happens to the brain after donation?
The decision to undergo a medical autopsy and provide tissues for a brain bank is a very personal one for patients and their families. After consent forms have been signed, our team will respectfully perform the autopsy. The results will be shared with the family. The brain tissue will be carefully and properly stored at our brain bank for future research.
What if the autopsy needs to be conducted somewhere else?
In such cases, we can readily work with other Pathologists/Medical Examiners but it would be important to contact the POND team before the autopsy occurs.
Is there a fee associated with donations toPOND Brain Bank?
No. At this time, there is no fee associated with these donations.
Can brain donations be made from donors not diagnosed with PANDAS/PANS?
Yes. Brains and brain tissue from donors who have not been diagnosed with a neurological disease are needed to serve as controls in research studies. Brains and brain tissue from donors with diagnoses of other neuroimmune disorders (e.g., Sydenham’s chorea, encephalitis, and Lyme disease) are also needed in the POND Brain Bank.
Does my family have to be affiliated with MedStar Georgetown University Hospital or Georgetown University to become a donor?
No. At this time, no affliation is necessary.
Researcher: FAQs
How to request brain tissue?
Tissue request forms may be obtained by email from Ms. Marina Selenica (ms4739@georgetown.edu). Please submit completed form and biosketch to Ms. Selenica who will respond within approximately 72 hours.
What is the process and timeline for obtaining samples for research?
All tissue requests and applications are reviewed on a rolling basis. Given how precious these tissue samples are, the Biospecimen Use Committee will convene to discuss the application and vote on whether to approve the request. Should questions arise, Dr. Brent Harris (bth@georgetown.edu) will contact the researcher.
After a consensus is reached to approve the request, a telephone call will be scheduled with Dr. Harris to discuss which tissues will be used, the transfer of material to the researcher, and any other questions.
After reaching a mutual agreement on all issues, a Material Transfer Agreement (MTA) with standardized language (for academic or industry purposes) will be drafted and sent to the researcher by our legal team for review.
Our goal is to say “yes” to every appropriate request. Thus, the POND Director and Biospecimen Use Committee work closely with each researcher to optimize experimental plans, validate assays, and ensure that researchers are always focused on how to further advance understanding of these disorders.
The POND Brain Bank
Alex Manfull’s Brain
When Alex died in August 2018, 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. At the time Alex’s brain was donated 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 the 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.
What does POND mean?
POND is the acronym for “PANDAS/PANS and Other Neuroimmune Disorders.”
About the POND Brain Bank
In January 2022, the POND Brain Bank was established within the Georgetown Brain Bank. It is the world’s only repository solely dedicated to brain tissue from donors diagnosed with “PANDAS/PANS and other Neuroimmune Disorders.” The Alex Manfull Fund (TAMF) was instrumental in establishing POND Brain Bank so that brain tissue would be available for research that will advance clinical understanding of these disorders, ultimately benefiting patients and their families. TAMF believes that by supporting basic research, its vision will be realized that no life will ever again be cut short – or interrupted for years – by these infection-associated neuroimmune disorders.
Brent Harris, MD, PhD, Director of Neuropathology, oversees POND Brain Bank. Requests of tissue for research are reviewed by a Biospecimen Use Committee composed of highly respected researchers and clinicians fromthe fields of neurology, psychiatry, rheumatology, and neuroscience.
Why is brain donation important?
Brain tissue enables the brain to be examined at the molecular and cellular level. Your postmortem tissue samples allow researchers to “see” what cannot otherwise be seen with any of the scientific tools currently available to study the underlying biopathology of these disorders.
PANDAS/PANS and other neuroimmune disorders are brain disorders. They are likely triggered by infections, metabolic disturbances, and other inflammatory reactions which, in some people, appear to cause the immune system to dysregulate and eventually impact the brain in ways that can have debilitating and even fatal consequences. And yet, it is not clear exactly what the underlying mechanisms are that lead to the symptoms associated with these disorders.
Brain donations provide researchers with an opportunity to expand their understanding about the underlying mechanisms of PANDAS/PANS so that more options for effective treatment and, ideally, prevention can be found.
A single brain donation offers valuable information to hundreds of research studies. Donations give hope to those in the fight against PANDAS/PANS and other related neuroimmune disorders.
How does one arrange a brain donation?
POND Brain Bank seeks brains from people who have been diagnosed with “PANDAS/PANS or Other Neuroimmune Disorders,” as well as those without neurological disease. (Healthy brain tissue is essential for comparison purposes in research.) For individuals interested in making provisions in their living wills for such a donation, please contact your attorney for guidance.
If a loved one who was diagnosed with PANDAS/PANS has died and you would like to learn more about donating his or her brain for research, please contact us as soon as possible after death. Brain tissue is most beneficial soon after a loved one’s passing.
We understand contacting the Brain Bank may occur during a very difficult time, but POND Brain Bank is available to assist with the process of making this important donation.
Our Neurology Brain Bank Coordinator, Ms. Marina Selenica, can be contacted for information and forms to review (ms4739@georgetown.edu or 202-687-4466). If you email or call outside of working hours, please leave a message and we will respond within approximately 24 hours.
Dr. Harris, Georgetown Brain Bank Director (bth@georgetown.edu), and Dr. Galam Khan, Georgetown Brain Bank Assistant Director (gak2@georgetown.edu), are also available to answer questions and discuss the process.
Family: FAQs
What happens to the brain after donation?
The decision to undergo a medical autopsy and provide tissues for a brain bank is a very personal one for patients and their families. After consent forms have been signed, our team will respectfully perform the autopsy. The results will be shared with the family. The brain tissue will be carefully and properly stored at our brain bank for future research.
What if the autopsy needs to be conducted somewhere else?
In such cases, we can readily work with other Pathologists/Medical Examiners but it would be important to contact the POND team before the autopsy occurs.
Is there a fee associated with donations toPOND Brain Bank?
No. At this time, there is no fee associated with these donations.
Can brain donations be made from donors not diagnosed with PANDAS/PANS?
Yes. Brains and brain tissue from donors who have not been diagnosed with a neurological disease are needed to serve as controls in research studies. Brains and brain tissue from donors with diagnoses of other neuroimmune disorders (e.g., Sydenham’s chorea, encephalitis, and Lyme disease) are also needed in the POND Brain Bank.
Does my family have to be affiliated with MedStar Georgetown University Hospital or Georgetown University to become a donor?
No. At this time, no affliation is necessary.
Researcher: FAQs
How to request brain tissue?
Tissue request forms may be obtained by email from Ms. Marina Selenica (ms4739@georgetown.edu).
Please submit completed form and biosketch to Ms. Selenica who will respond within approximately 72 hours.
What is the process and timeline for obtaining samples for research?