Hi, I have been reading all of these posts on brain donation. I think that doing this is imparative to the future generation of LBD sufferers. Especially in our case of the brain damage from birth the inoperable brain tumor, seizures and now LBD.I am sure there is so much that can be learned. Can someone point me in the right direction of how to go about this? Thank you
Tricia

Tricia,
I will email you about this. Basically, I recommend brain tissue be donated to Mayo Jax because they are doing more brain research on LBD than any other US institution. The issue with using Mayo Jax is that we have to find someone to handle the tissue procurement, and that can cost as much as $1500. I will look into the price in your local area, and get back to you. Can you give me the city/state where the funeral home is located that you will be using?
Robin

Hi Robin,
Thanks for your reply. I have been off the net the past few days but anyway. Her funeral will be conducted in Frederick County, Maryland although her buriel will be at our family plot in Virginia. We are fairly close to Baltimore where the Johns Hopkins Research Hospital is located (don't know if they do the brain donation) and where my sister was finally accepted and diagnosed and where we go to see her Dr. The $1500 would not be an issue and in my opinion well worth the money if it can help just one person in the future. I have read on this forum ( I think ) that some places take a month and some a year for results meaning an absolute diagnosis of LBD. Do you know if this is correct? Anyway, any suggestions will be greatly appreciated. Thanks,
Tricia

Hi Tricia,

I will email you. Mayo Jax is the fastest I know of; as long as the medical records are there (these can be ordered in advance....now, even) they guarantee a turn-around of 6 weeks. I got my Dad's neuropath report from them in 2 weeks...and the MD did a visual inspection on the tissue when it arrived! Most other places I know of take 6 months or 12 months.

Johns Hopkins does have a brain donation program. Let me try to find out how long they take. If your sister has been seen there on a REGULAR basis, that would be free.

What CITY in Frederick County is the funeral home in? I won't call the funeral home (without your explicit permission) but I need to know the name of the city to find out if someone can travel there.

Robin

oops, sorry, Frederick is the name of the city in Frederick County. My apologies, I'm just used to it. Oh and yes she is a regular patient at Hopkins. This is where we stayed for a few days while having all those tests. Her Dr. is there as well. It is the only hospital we will ever take her to after what we went thru at other hospitals. They treated her like an animal.Being a research/learning hospital makes a world of difference. Anyway, thanks again.
Tricia

Tricia,
I found someone today who can do the tissue procurement at a reasonable cost. I have emailed you about this. I'm reluctant to put these financial details here on the Forum.
Robin

I am very interested in learning more about the process for brain donation.

Could someone suggest a website?

Thanks, Joy

Joy,

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:
http://www.organdonor.gov/donation/religious_views.htm

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!

Robin


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."

Dear Robin,
Thank you again for all your help. I finally heard back from Hopkins. My sister was turned down for brain donation, They are only interested in those brains that are "clean" LBD/PD. Her retardation and brain tumor makes their research for LBD too foggy and not precise. I would appreciate your help with Mayo Jax or any other info you could direct my way. You are a font of info.
PS my sisters PD is getting so bad she can't feed herself in the mornings. Her balance, walking and dizziness are progressively worse too. I think because of her "other" issues she may be going down faster. It breaks my heart.
Thanks again
Tricia

Hi Tricia,
Sorry to hear about JH. I think that's the reason they aren't on the NINDS list is because they are selective about brain tissue they accept. I'll contact you soon.
Robin

Tricia - had not heard from you for awhile and was wondering how your sister is doing. Did she start hospice services, and is she getting more compassionate care than what was happening before? Take care ...

Hi Renata,
Thanks for asking. Sister is going down hill faster with the parkinsons. In am she trembles so bad mom has to hand feed her, head hanging. Her walking and balance is worse, been incontinant. Mom still in denial. Tryng to get her off Abilify ( but they just lowered depakote - already got her off Effexor, she still takes diomox sequels which needs to stop and she takes klonapin - some of these drugs are worse for those who are retarded and has/had seizures)- the parkinsons has gotten worse since she was put on Abilify but mom is afraid to take her off - she was VERY agressive towards her and had awful bloody disturbing hallucinations. The Abilify deff worked for those problems but has made the PD so much worse. We are actually doing an "intervention" if you will with my uncle (moms brother) shortly. Mom refuses help of anykind (stopped paid for medicare in home therapy for example and in home help) and she is too old to be doing this. Will keep you posted.
Thanks for caring and I was sorry to read about your husband recently.
God bless.
Tricia

Dear Robin:

Thank you for your detailed reply. I certainly understand that you would not want to spend a lot of time on a process that someone might decide not to follow.

I definitely want to donate Charlie's brain and any or all of his body to research. Charlie and I have talked about this and he is very much in favor of donating his brain and body. None of our family will object. The price of $1500. for procurement is doable.

We live in Melbourne Beach, Florida, which is less than a 4-hour drive down the coast south of Jacksonville. Melbourne Beach is on the barrier island and the closest town on the mainland is Melbourne, Florida.

Although Charlie is doing reasonably well now, we want to have arrangements in place so that procurement is timely. Both of us desire to be cremated so viewing the body is an unnecessary consideration. Again, thank you for your time and help in this process.

Joy Dimon

P. S. My email is on file with LBDA if you need it. I will be glad to furnish whatever information you need.

Dear Robin:

Sorry, you asked the city/state for the funeral home, not where we live. We have not made arrangements but would use Brownlie-Maxwell Funeral Home, 1010 E. Palmetto Avenue, Melbourne, Florida 32901.

Joy

Hi Joy,
I will look into this after the holiday!
Robin

PS. You can also put your email address "on file" here on the LBDA Forum by updating your profile. No one can view your email address but an EMAIL button will appear beneath each of your posts. This enables people to click on the button and send you an email. They will only know your email address if you choose to reply from your email account.