I thought of one other thing that may be important to some....
Brain donation occurs for two reasons: first to have a confirmed diagnosis for family (and don't forget about sending the report to all MDs you came into contact with....especially the ones who misdiagnosed!) and second to have the tissue involved in medical research.
I give a slight advantage to Mayo Jax on both fronts. First, the neuropathologist there (Dennis Dickson, MD) was on the committee that developed the neuropathological criteria for diagnosing DLB. (He's also on the LBDA's SAC.) Of course the whole point of published criteria is that other neuropathologists can follow it.
Second, ideally brain tissue is donated to the institution doing the most research utilizing the tissue. Unfortunately no one in the US is doing the sorts of large clinicopathological correlation studies in DLB that we are seeing in other parts of the world for different disorders. Yes, this research is very expensive and very time consuming but it's essential.
If you go to PubMed (www.pubmed.gov
), you can see how much research either institution has done. The search I did was "Mayo DLB pathologic" and "Harvard DLB pathologic." I think the latest study out of Mayo looked at about 60 path-confirmed DLB patients. Harvard had a study a couple of years ago that looked about about 9 path-confirmed AD/DLB patients. So, I give a small advantage to Mayo at this point.