The 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 feel free to contact us.
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 enrollment to the brain bank may occur during a very difficult time, but the POND Brain Bank is available to assist with the process of making this important donation.
Our Neurology Brain Bank Coordinator can be contacted for information and forms to review (Ms. Carolyn Ward, cw2@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. Khan, Georgetown Brain Bank Assistant Director (gak2@georgetown.edu), are also available to answer questions and discuss the process.
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 by the family, our team will respectfully perform a brain autopsy. Results from the autopsy will be shared with the family. The brain tissue will be carefully and properly stored at our brain bank for future research studies.
Is there a fee associated with donations to the POND Brain Bank?
As long as we continue to have institutional, philanthropic, and/or grant support for brain donations to the POND Brain Bank, there is no fee associated with these donations .
Can brain donations be made from donors who were not diagnosed with PANS/PANDAS?
Yes. Brains and brain tissue from donors who have not been diagnosed with neurological disease are needed to serve as controls in research studies. Brains and brain tissue from donors with diagnoses of other neuroimmune disorders, such as Sydenham’s chorea, encephalitis, and Lyme disease, are also eligible to be accepted.
Does my family have to be affiliated with MedStar Georgetown University Hospital (MGUH) or Georgetown University to become a donor?
No. Neither individual donors nor families has to be affiliated with MGUH or Georgetown to donate tissues to the POND Brain Bank at this time.
How can I support The POND Brain Bank?
The Alex Manfull Fund for Brain Research at the Georgetown University Brain Bankwas established to support the POND Brain Bank’s research and education efforts in PANS/PANDAS; their work to encourage the use of this brain tissue in research; and their efforts to encourage the donation of other brains. This brain tissue opens brand new research opportunities and, we hope, will pique the curiosity of young medical students at Georgetown Medical School.
Alex’s brain tissue is available for research now. Hers is the first known brain characterized by PANDAS/PANS that has been made available for research. We assembled a biospecimen review committee composed of top researchers and practitioners in this area of study and tasked them with the review of all research proposals. Already Alex’s brain tissue has been used in what promises to be very significant research on genetic variants in PANS.
Donors: Frequently asked questions
How does one become a donor?
The 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 feel free to contact us.
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 enrollment to the brain bank may occur during a very difficult time, but the POND Brain Bank is available to assist with the process of making this important donation.
Our Neurology Brain Bank Coordinator can be contacted for information and forms to review (Ms. Carolyn Ward, cw2@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. Khan, Georgetown Brain Bank Assistant Director (gak2@georgetown.edu), are also available to answer questions and discuss the process.
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 by the family, our team will respectfully perform a brain autopsy. Results from the autopsy will be shared with the family. The brain tissue will be carefully and properly stored at our brain bank for future research studies.
Is there a fee associated with donations to the POND Brain Bank?
As long as we continue to have institutional, philanthropic, and/or grant support for brain donations to the POND Brain Bank, there is no fee associated with these donations .
Can brain donations be made from donors who were not diagnosed with PANS/PANDAS?
Yes. Brains and brain tissue from donors who have not been diagnosed with neurological disease are needed to serve as controls in research studies. Brains and brain tissue from donors with diagnoses of other neuroimmune disorders, such as Sydenham’s chorea, encephalitis, and Lyme disease, are also eligible to be accepted.
Does my family have to be affiliated with MedStar Georgetown University Hospital (MGUH) or Georgetown University to become a donor?
No. Neither individual donors nor families has to be affiliated with MGUH or Georgetown to donate tissues to the POND Brain Bank at this time.
How can I support The POND Brain Bank?
The Alex Manfull Fund for Brain Research at the Georgetown University Brain Bank was established to support the POND Brain Bank’s research and education efforts in PANS/PANDAS; their work to encourage the use of this brain tissue in research; and their efforts to encourage the donation of other brains. This brain tissue opens brand new research opportunities and, we hope, will pique the curiosity of young medical students at Georgetown Medical School.
Alex’s brain tissue is available for research now. Hers is the first known brain characterized by PANDAS/PANS that has been made available for research. We assembled a biospecimen review committee composed of top researchers and practitioners in this area of study and tasked them with the review of all research proposals. Already Alex’s brain tissue has been used in what promises to be very significant research on genetic variants in PANS.