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 Brain Donation 
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
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Someone emailed me this question recently:

"Robin - When you first started becoming involved in brain donation, on what basis did you evaluate various brain banks, reaching the conclusion that Mayo Jax was the best?"

There are two reasons to donate a loved one's brain -- to confirm the diagnosis and to enable research. Brain bank evaluation needs to consider both of these objectives.

With the goal of confirming a diagnosis, these items are important:

* the speed of getting a neuropathology report to families. (Mayo Jax does in 6 weeks what it takes 8-16 months for other brain banks to do.)

* the thoroughness of the neuropathology report. (Ask for an idea of how many pages the report will be. Or ask for a sample report for someone diagnosed with the disorder you are interested in. Incredibly, I've seen two-sentence neuropath reports!)

* the standing of the neuropathologist, and how many cases he/she has seen of the disorder you are interested in. (I have seen several neuropath reports where the neuropathologist says "this looks like PSP but it also looks like CBD." In those cases, I've suggested that the family order brain tissue be sent to Mayo Jax, and the neuropathologist there comes up with a conclusive diagnosis quite easily. You want someone who has seen lots of cases before such that diagnosis is very straightforward.)

* the financial cost to the family in working with that brain bank. (The disadvantage of Mayo Jax is that the family may pay up to $1500 to accomplish brain donation.)

* the "hassle" to the family in working with that brain bank. This includes how extensive the required paperwork is, the family's involvement in ordering medical records, and the requirement to find a person to do the brain procurement.

With the goal of utilizing brain tissue for research, these items are important to consider when evaluating a brain bank:

* the quantity of medical journal articles being published by that brain bank utilizing brain tissue for the disorder of interest. How do you find this out? Ask the brain bank coordinator for a list of all the published journal articles by the neuropathologist on a specific disorder. Or, do a PubMed search (pubmed.gov) with the name of the disorder and the name of the institution (or neuropathologist).

* how long will this brain bank likely be around? Sadly, there is a brain bank located in the LA area that is on the verge of shutting down its freezers, and no longer accepts PD or atypical parkinsonism brain donations! Most brain banks seem to be severely cutting back due to the financial situation in the US. Is the donated brain just going to be sitting there, un-used, or have to be destroyed?


Sat Feb 06, 2010 2:32 pm
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I extend my condolences to Lucille and her family on the passing of her Father, I was saddened to read this!

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Irene Selak


Sat Feb 06, 2010 7:19 pm
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Post Broken link
I hope I can get this right. last year Robin posted a list of questions and in it she mentioned something I had written. She gave the link which has since become disconnected. I think the Q. and A are as timely now as they were then, therefore I will attempt to give the links:

Robin's post: # 2481--- LBD Research----Brain Donation [page 2]
http://community.lbda.org/forum/viewtop ... sc&start=0



Mine:
http://community.lbda.org/forum/viewtopic.php?t=1570
post # 429 under Symptoms and Diagnosis

DrP


Last edited by dorthea on Mon Feb 15, 2010 9:04 pm, edited 1 time in total.



Mon Feb 15, 2010 8:56 pm
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DrP,

Oh, that's a great post of yours. You can find it now at:
http://community.lbda.org/forum/viewtopic.php?t=1570

When the LBDA upgraded its website last year, we lost all of the links. The "secret" is to add "community." in front of lbda.org

I will edit my old post so that people are not confused.

Thanks,
Robin


Mon Feb 15, 2010 9:01 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Perhaps this has been asked and answered elsewhere but I haven't been able to find it: Why does the family have to pay to donate a brain for research? I'd think that research facilities are used to covering the costs of purchasing things they need to do their work. Is that non-sensical thinking? When people donate other body parts do the donors' families pay for that too?


Wed Apr 21, 2010 5:55 pm
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For the four or so years I've been helping people with brain donation, I've been asked this question many times. I'm not sure of the "right" answer but here's my input.

In the simplest terms, there are insufficient research dollars out there to support brain donation.

With a few institutions in the US, brain donation is free as long as you've been a patient there, participating in the clinical research program. With a small number of disorders (LBD is NOT one of them in most states), brain donation is free. With a small number of disorders (LBD is NOT one of them but CBD is), brain donation is supported financially by a national organization. If you are lucky enough to live in FL or a certain area of SC, LBD brain donation may be free for you.

The family does benefit considerably through the brain donation as typically a neuropathological analysis would cost the family $3K+. Most families pay no more than $1500 for brain donation.


Wed Apr 21, 2010 8:11 pm
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In my dad's case, he has had the POSSIBLE diagnoses of:
PDD
LBD
DBD
Vascular Dementia
Fronto Temporal Dementia
ALS
plus Spastic Paraparisis, Ventricular Assymetry and Stage 3 kidney disease.
So, what purpose would it actually serve for us to spend all that money to find out what type of dementia he really has, once he has died? Is it going to make any difference to my life, my sister's life or my kids' lives? I guess I'm trying to justify why we would want to spend all that money for information that is pretty anti-climactic. For those of you who have paid to donate, did it make a big difference to you? Was it worth the expenditure, and if so, how? Thanks. Lynn


Wed Apr 21, 2010 8:18 pm
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Certainly your father does not have all of these disorders. (I think you meant CBD, rather than DBD.)

If you look earlier in this post (and in other posts here, by DrP, for example, and SharonN, who donated both her husband's body and brain), you'll see that many of us who did pay for brain donation got a huge amount of value out of it.

I paid $1500 for my dad's brain donation. That was some of the best money we spent because it produced something positive, despite the crappy situation. In a very real way, my dad lives on.

If you subsequently develop a movement disorder or a dementing illness, knowing definitely what your father had is a huge leg up for those diagnosing and treating you. (If a parent has a dementing illness, a child's chance of developing a dementing illness is higher than someone whose parents didn't have dementia.)


Last edited by robin on Thu Apr 22, 2010 12:43 am, edited 1 time in total.



Wed Apr 21, 2010 9:17 pm
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Right - typo - I did mean CBD. I listed the possibilities and have been told by 3 doctors that he has several different things going on, making diagnosis even more difficult. For sure he has the kidney disease, and they can see on MRI that his brain has shrunk at different rates on each side. But all the dementia-related possible diagnoses are just possibilities. Who knows what is really going on, especially if he has, say, ALS plus some type of dementia.
We are still deciding if donation is something we want to do.....


Wed Apr 21, 2010 9:30 pm
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The only way to know is for brain autopsy upon death.

I heard an MD say last week that "we don't take the patient's brain until he/she is done using it." Not sure how comforting that is!

I know of many people who have regretted not making arrangements for brain donation. I don't know of anyone who went through with brain donation and regretted that choice.

Lynn - your particular family's situation with regard to brain donation expenses has changed due to the CBD diagnosis.


Wed Apr 21, 2010 10:37 pm
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When we talk about Frank's disease, we alway say he's been dx with LBD, we think. I know he has dementia, but I, as well as our children, would like to know, FOR SURE, for their future.


Thu Apr 22, 2010 6:32 am
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I guess one of the things I'm struggling with is, if we eventually have a definite diagnosis of what type of dementia he has, or ALS, what positive outcome can that have? I suppose in the future there could be a treatment for this, but since there isn't, if we have that knowledge and there is no treatment, is that going to be better or worse knowing? From what I know right now, I would not burden my kids with the idea that this horrible disease is likely to be in their future.
How do you deal with knowing something like this is likely to be your future too? I realize these are pretty philosophical questions with no concrete or right answers, but I do wonder about it.


Thu Apr 22, 2010 10:01 am
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My family wants to know what dementia conditions my LO has after she dies. While I am almost certain that my LO has LBD (and possibly AL) I would like to know because it might factor into whether to buy Long Term Care Insurance or how I want to deal with my own death. I don't want my husband to have to care for me if I get LBD. Also, on an emotional level I want to know for sure what I've been fighting all this time.

I'm in the process of arranging for a brain autopsy in our town. We have a good neuropathologist as director of the local pathology clinic here and I've talked with him. He has determined LBD many times and also looks for other brain diseases when he is doing the examination. It should cost $600 for the brain autopsy and $260 for use of the facilities at a local funeral home. I'm thinking of prepaying because we are spending down.

Robin, do you think that Mayo JAX could use the brain autopsy results or prepared brain tissue when the pathologist no longer needs it? If so, do you know if there would be a cost other than shipping to them? If this is a possibility I would like to contact them to find out the process. Thanks.


Thu Apr 22, 2010 10:52 am
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AnnieN,
Mayo will only accept tissue that has been procured according to its protocol. We were in a somewhat similar situation where the local neuropath was very good. But he's not doing any RESEARCH into neurodegenerative disorders. See my (personal) criteria above as to how to select where the brain is donated.
Robin


Thu Apr 22, 2010 10:54 am
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Joined: Wed Dec 30, 2009 1:46 pm
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While I was in Yuma, AZ, a woman in my support group made arrangements with some institute [it was not Mayo] in Phoenix to donate her husband's brain. I think he had FTD but they took ALL brains with a dementia dx. They came to Yuma, collected the body from the ALF where he died and sent her the report a few months later. It did not cost her a dime, which was a good thing, as she was broke. I think I've got their paperwork somewhere. Nothing like that up here.


Thu Apr 22, 2010 11:21 am
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