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 RE: I'm in but how 
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Joined: Sat Mar 25, 2017 1:32 am
Posts: 48
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Post RE: I'm in but how
Hey Jeff,

I've looked into the possibility a little and the best I can tell you have to find somewhere such as the Mayo Clinic, Cleveland Clinic, etc... doing Lewy Body research and hook up with them I was not able to find a centralized donation facilitator so to speak. It seams they like to get you as early as possible so they can study the progression of your disease, changes in symptoms, etc... Then you have to arrange for your own harvest by a qualified harvester for lack of a better word and pay for it yourself. The sites I read said it was easiest if you were near a teaching university because they were more likely to have someone qualified to harvest. And currently the average cost is around $1500. It seems that some studies have grants built in to help defer the cost of the harvest.

That's what I found with a quick search, I believe most is accurate but can't be 100% sure. I would really like to donate but it doesn't seem to be very easy.


Fri Mar 31, 2017 6:04 pm

Joined: Fri Mar 10, 2017 11:36 am
Posts: 135
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Post Re: RE: I'm in but how
Wow, that sounds insane (and trust someone with dementia; we know crazy like we owe it money)...we have to PAY to help with the research? WTF is that? I need to look into this.... :shock:

Sat Apr 01, 2017 1:55 pm

Joined: Mon Apr 17, 2017 3:00 pm
Posts: 6
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Post Re: RE: I'm in but how
The University of Miami Brain Endowment Bank pays for everything. There is absolutely no charge to the donor or the family. You do have to provide as much medical information as is possible. They give you a card with who to call at death. They will ask you to pack the head with ice as quickly as possible and they will make all the arrangements from there on in.

Mon Apr 17, 2017 5:10 pm
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