BSN Supporting Parkinson’s Research Plus Lyme Disease Research

In October 2021, we helped a gentleman with Parkinson’s disease (PD) make arrangements for his brain donation plus donation of his cerebral spinal fluid (CSF) to Lyme disease researchers.  The gentleman had several positive tests for Lyme borreliosis.  He decided this was the best approach in terms of donating — brain for PD research and to confirm the diagnosis, and CSF for supporting Lyme disease research.  He and his family knew that the Lyme disease diagnosis would not be confirmed but this was of no concern to them since he had several positive tests for Lyme borreliosis already But he was hoping that his CSF could aid researchers.

In December 2021, the family received the neuropathology report, confirming Parkinson’s disease.

This weekend, Brain Support Network was contacted by the National Disease Research Interchange (NDRI,, who collected the CSF on behalf of the Lyme Disease Biobank (LDB,  The LDB wanted to receive the neuropathology report to further its research.  With the family’s permission, we shared this report.

LDB-affiliated researchers are examining CSF from several patients, looking for very small amounts of aggregated α-synuclein.  Misfolded alpha-synuclein protein is found in Parkinson’s disease, dementia with Lewy bodies, and multiple system atrophy.

The research team is looking for α-synuclein in CSF of patients with Lyme disease to see if this could be a potential mechanism of neurodegeneration caused by Lyme neuroborreliosis.  Of course knowing if the donor had autopsy-confirmed PD will allow the researchers to know that the alpha-synculein came from the PD.  This knowledge is assisting the Lyme disease researchers.

We were honored to make comprehensive arrangements for this family so that both donations could happen according to the respective protocols. Let us know if you’d like us to make similar arrangements for you or your family member.