Steps for Brain Donation
7. Within two weeks after death, inform the person’ s neurologist and ask to send medical records to the Mayo Clinic Brain Bank if they had not been requested already and sent in advance.
8. After brain donation has occurred, if you wish to submit a request for reimbursement up to $ 1,000 for expenses incurred related to brain donation( e. g., pathologist fee, fees for cold storage / facility / transportation for the purposes of brain donation), please contact Joanna Teters at 347-294-2871 or teters @ curepsp. org.
You are welcome to reach out to us with questions related to the CurePSP Brain Donation Assistance Program.
We recognize that this multi-step process can seem daunting. Families frequently share with us that they gain peace of mind once the brain donation setup is behind them. Please know that you do not need to be alone in this process. Your family or healthcare team may be able to assist you, and the staff at CurePSP and the Mayo Clinic Brain Bank are here to offer support as much as possible.
• For questions related to the donation process, assistance in getting copies of the patient’ s medical records for use in ongoing research projects, and help locating a pathologist in your area to collect the tissue, please contact:
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Rachel LaPaille-Harwood Mayo Clinic Neuropathology Program Coordinator Phone: 904-953-2439 Email: lapaille-harwood. rachel @ mayo. edu
• For questions related to CurePSP, including this brain donation program, the diagnoses, or other support or educational resources:
Jessica Shurer, MSW, LCSW Director, Clinical Affairs and Advocacy, CurePSP Phone: 919-525-8355 Email: shurer @ curepsp. org
Please note: CurePSP offers the Brain Donation Assistance Program as a source of support; as a diagnostic tool for patients and families; and as a contribution to science, understanding, and cure of neurodegenerative disease. CurePSP is proud to be able to offer reimbursement, when requested, up to $ 1,000 for incurred related expenses. At this time, CurePSP is not able to assist in the coordination of brain donation, nor is CurePSP responsible for the quality or the experience of the process itself, including working with a pathologist, the coordination and steps at time of death, the cost of services that are not reimbursed, or the resulting neuropathology report. By completing this paperwork and participating in this program, you are acknowledging that you are aware of and in agreement with the process and the role of CurePSP as described above.