Not sure what sort of website you are looking for. I used to point people to the CurePSP Brain Donation Program website but people not dealing with PSP seemed to take offense to that or they got very confused/frustrated in having to overlook the term "PSP" everywhere.
Here's a list of brain banks in the US:
http://www.ninds.nih.gov/research/parki ... nbanks.htm
Some focus on AD. Some focus on PD.
Here's a list of religious viewpoints on organ donation:
I can't quickly think of a website that explains the process involved. But basically it's this:
1. Arrangements must be made IN ADVANCE. This includes:
a) knowing which brain bank the tissue is going to
b) knowing who is handling the tissue procurement and shipment of tissue to the brain bank (and what the charge is for procurement, if any, and when this charge has to be paid)
c) if the tissue procurement is to be done at a funeral home, knowing that they support this activity (and what the charge is, if any)
d) if the tissue procurement is to be done at another facility, knowing how transportation is handled (and what the charge is, if any)
e) knowing what consent forms must be signed and when these need to be provided
f) knowing what medical records are required and when these need to be requested
2. Before death, whenever possible, the person handling the tissue procurement should be put on alert.
3. After death, notify the person handling the tissue procurement.
4. The tissue procurement must occur within 24 hours of death, though many brain banks have tighter intervals (8 hours, 12 hours). The faster the better as tissue starts deteriorating as soon as blood stops circulating. (There are some things one can do to lessen the deterioration.)
5. After tissue procurement, the body is released. This is the time to conduct a body autopsy, if desired. (That's handled by someone else.) Or the body can go to a funeral home for preparation for burial or cremation. Brain procurement doesn't preclude an open-casket (viewing).
6. At some point in the future, the family will receive a report as to the confirmed diagnosis. In my experience, there are always some elements of the report that cause surprise. I recommend the family provide a copy of this report to all treating MDs, and all blood relatives. (My father's neuropathology report and body autopsy report are part of my medical record.)
I am familiar with many of the brain banks in the US. I have a strong preference for Mayo Jax because (a) you get the neuropathology report in 6 weeks' time (often less) whereas other brain banks take 6-12 months, and (b) Mayo is conducting a significant amount of research into DLB. Mayo Jax has hundreds of LBD brains. This means that if a different institution is conducting brain research in DLB, they are likely to involve the tissue at Mayo.
The Mayo Jax neuropathologist was part of the team that wrote the neuropathological diagnostic criteria for DLB (and several other disorders). Maybe 2 years ago I saw a NY medical institution's neuropath report and was upset that the pathologist said "it could be X or it could be Y." Thinking that was plain wrong, I suggested the family request the brain tissue be sent to Mayo Jax for a second opinion. The Mayo Jax neuropath report said "the diagnosis is clearly Y." Mayo Jax can say this because they've seen hundreds of brains with these various disorders. Clearly this was the first brain with diagnosis Y that the NY institution had ever seen. Knowledge and experience count for something.
The downside of Mayo is that they have insufficient funds to pay for the tissue procurement. This can cost as much as $1500. (That's what I paid. I consider it the most effective, beneficial purchase made with my dad's money over the last few years of his life.) And it often takes many, many phone calls to find someone who is familiar with brain donation. If you want to donate tissue to Mayo Jax and are willing to pay as much as $1500 for tissue procurement, let me know what city/state the funeral home is located in and I can help you find someone for the tissue procurement. You can also contact Beth Marten at the Mayo Jax Brain Bank. (Jean posted Beth's contact info several months ago.) Beth was out of the office for a couple of months, but she's back now and can give you names of tissue procurement people to call.
Updated on 2/6/10: If you live in FL and can participate in a dementia research program going on in FL, brain donation is free. Participating in a research study (requiring an MRI and extensive clinical evaluations) is not everyone's cup of tea. Probably half of the people who live in FL who contact me about brain donation are willing to participate.
Updated on 2/6/10: For SF Bay Area group members, I had figured out a way for free brain procurement. After using this method for the last 9 months or so, I've decided to stop using it. The local research organization was taking MONTHS to get the tissue to Mayo Jax for analysis. In one case where the clinical DX was LBD but the path DX was PSP, the local research organization did not send tissue samples in time for a major PSP research study. Those are all big no-no's in my book.
If you live in Houston, I can put you in touch with a support group leader there who also figured out a similar deal for her group members years ago. And I know of two others in the US who may be willing to do the tissue procurement at no charge but you have to live close to them to make it worthwhile.
Perhaps one-third (one-half?) of the LBD families who contact me don't go through with the brain donation. (Curiously, near all PSP, CBD, and MSA families who contact me do go through with brain donation.) I'm not sure what happens along the way. I try to set expectations very high about the brain procurement costs ("as much as $1500"). Very often it is less than this but I can make no promises. Sometimes adult children who are NOT the healthcare POAs contact me, and then the healthcare POA decides he/she doesn't want to donate brain tissue. And sometimes people just can't deal with something that is closely associated with the death of their loved one. If that describes you but you are willing to sign the consent form, then I'd suggest getting another family member or close friend to work on all the advance arrangements.
Added this on 3/5/09: I would like to mention another deal-breaker that came up earlier this week. In perhaps one-third of the cases, the person or institution handling the brain tissue procurement requires ADVANCE payment for their services. In these cases, I advise the family to mail a cashier's check or money order immediately to that person or institution, along with the consent form. In the case earlier this week, while the family can afford to pay $600 for the brain procurement, they cannot pre-pay this. They will need the cash from their loved one's insurance policy to pay for funeral expenses, etc. So, sadly, this family cannot accomplish brain donation. I have found another facility that would charge after the fact but the costs would go up by several hundred dollars.
Brain tissue is an extremely precious gift and it should go to the organization you think is best placed to utilize it. I will be forever grateful to my father for donating his brain tissue because we have confirmation of his diagnosis. He felt it was the only thing he could do for his fellow man. (There were no clinical trials for him to participate in.) We discussed this as a family; my husband and I signed up to donate our brains during the conversation we had with Dad. This took the personal sting out of the conversation. And, perhaps oddly, I do have comfort in knowing that Dad's brain is sitting next to the brains of other people that I've met, and that my brain will join his one day!
PS. My dad also agreed to allow his body to be autopsied (but not donated). That was a huge gift as well. It's very helpful for blood relatives to know what they may have inherited! I learned my dad had heart disease....never knew that. (Nor did he.) I've posted extensively recently on body autopsy so I won't go into it here. And you didn't ask about it. But if you want to look, do a search on "body autopsy" with author "robin."