Several weeks ago I filled out the form that I printed from one of the LBD sights. Today I got another form to fill out, signed and have witnessed. I filled one out for both Frank and myself, at the moment, I filled out normal for my dx and LBD for Frank. I felt a bit guilty asking Frank so I suggested we both donate, he thought that would be fine. Very easy, and we live less that 20 miles form the Harvard Brain Bank.

Thanks to you and your husband for doing this. I think a "family donation" is a great idea. In our family, we asked everyone to donate as well -- a group thing. My brother would not, but my husband took his place. So 3 of us signed up. The two of us who are presumably normal now could have a neurodegenerative disease later so you never know! Brain banks are desperate for "normal" brains.

We also gave a copy of our papers to our healthcare proxies and we modified our living wills to indicate that this was an absolute requirement post-mortem.

The advantage of Harvard's Brain Bank is that it's free. The disadvantage is that it takes several months for the neuropathology report. The alternative, in my mind, is Mayo Jax. The disadvantages are that you have to find someone to do the tissue procurement yourself and there is usually a cost involved in this (expect $1500). The advantage is the you get the neuropath report in 4-6 weeks; that's the committed timeframe. Many in our local group got the report in 2 weeks, which was enough time to tell people attending a memorial service "in lieu of flowers donate here because it's confirmed this is the disease he/she had."

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.