Good morning all,
A friend who also has DLB and I were discussing donating our brains for DLB research and we realized that neither of us had any idea of how to go about it. After a quick internet search the following is a summary of what I found but I would like some conformation that it is correct if any of you could provide that.
I could not find a centralized registry that handles this situation. I started at LBDA.org and branched out from there without success. Apparently you must find a group (think Mayo Clinic, Cleveland Clinic, etc...) that is conducting DLB research and accepting new patients. It seems they prefer to enroll you as early in your disease as possible so that they may follow the progression of the disease and have visual (PET scans, MRIs, etc..) evidence of the brain's changes over the course of the disease to compare to the actual brain at autopsy.
In most cases, you must make arrangements for the brain harvest upon death yourself. It seems that it is the rare mortician, coroner, etc... that is qualified to remove the brain in accordance with the requirements for donation. I found the common wisdom is that donation is easiest if you live somewhat close to a teaching university hospital but this is not an absolute necessity. Also, in most cases, you will be responsible for arranging for the cost of harvest. From what I could find, the average current cost of harvest is ~$1500. Apparently some programs do have monies set aside to help at least partially offset this cost.
That is a gross summary of the info I found. Again, I am looking for confirmation or correction. Either way, I would like to know.
Hope you have an awesome Saturday,