Robin, I so want to do this, but if there is a cost don't think I can. Who should I try to contact. Vanderbilt Medical Center is here. Should I just ask his psychiatrist?Melinda

Hi Melinda,

Please email me privately about this. (You don't have an email address listed with the Forum "system." I really hate those PMs.) I may be able to pull some strings to help you. I will need the address of where ever your husband is living. (I think he's in a facility.) And what big city are you near?

If your husband is seen at Vanderbilt, definitely inquire there. They used to have a brain bank (several years ago) but I'm not sure it's operable any more. Ask the psychiatrist. Ask the neurologist. Hopefully both know about brain donation in your area.

There are some no-cost approaches but they are not ideal because the tissue doesn't get to a brain bank actively involved in research. But if that's the only choice, you should go with it. I'll know more after I've had a chance to dig around.

Robin

I'm a bit frustrated on the brain donation issue, too. Duke University's Alzheimers Center has a brain bank but only accepts donations from people enrolled in its program. A quick look didn't show up any other potential banks close to Raleigh.

I'll get back on the search soon, but I wish there were a clearinghouse to make it easier to locate a facility/program. Given the cost of Mother's care now, I don't think we're likely to pay for a brain biopsy, though heaven knows, I would love to see what's in there.

Garnet

Garnet -

And is your mother not seen at Duke? Is her neurologist or psychiatrist affiliated with a major medical institution?

Harvard's Brain Bank is no cost. I don't recommend people donate tissue there because (a) they don't do any LBD research, and (b) it takes a long time to get the autopsy report. (It's an autopsy, by the way; not a biopsy.)

In my opinion, you get the biggest bang for the donation in giving brain tissue to Mayo Jax. The neuropathological analysis and report are free through Mayo Jax. But you've got to get the tissue to them.

If you will email me the address of the facility where your mother is currently living, I can see what I can find out for you. On *rare* occasions I'm able to find something for free. I only like to ask a pathology service if will do the tissue procurement for free when there's financial hardship.

I completely agree with your desire to see a clearinghouse for brain donation. For several years I've been thinking about putting together a non-profit organization to do this but I have not found anyone willing to donate big $ to support this activity.

Robin

Robin,

Thank you so much, but you don't have to take on that load for me. As soon as I have some energy -- on top of everything else, I've started a new job -- I'll start looking again.

Mother is not a Duke patient; and I don't know that her neurologist or psychiatrist is affiliated with one of the universities here, though I could be wrong. She was a patient at UNC Hospitals a few months back, but even though they recommended Hospice then, nothing was ever said about tissue donation.

I'll let you know if I'm successful. In all likelihood, I have some time. Despite the Hospice recommendation, Mom's actually in good shape if you don't count the LBD symptoms, and they're not end-stage yet.

Garnet

Garnet,
I'm happy to help with this as it's a cause I believe in. It will take one or two emails for me to get you one or two choices. It would take little of my time.
Robin

I guess it is a bit morbid that I am now starting to think about brain donation/autopsy. Are you still thinking about funding for a clearing house for LBD (and other?) brain donation? I have a suggestion: The Foundation for NIH Research. This is a voluntary organization that exists to aid NIH research outside/above/beyond what is possible through government mechanisms. Especially if you could get one of the NIH directors, like Story Landis, behind it I expect they could help get money. It would be a great national research resource and I think NIH is quite interested in that sort of money-leveraging investment. cheers,
F2D

If you give me a name, phone #, and email address, I will contact them.

One problem is that NIH itself isn't doing brain research on LBD and the other atypical parkinsonism disorders, and I don't think NIH funds any of the brain banks doing this research.

Hiya, Robin. Got lots of stuff for you and will email the details to you directly using the email button. A quick run through intramural research shows 10 research projects related to LBD or (mostly--) Parkinson's. I will give you the list of these plus the link to the page for searching. Some of these are quite basic research or translational (e.g. mouse model of alphasynuceinopathy).

The main way NIH supports inter-institutional resources, such as a tissue bank available to ALL NIH-funded research (i.e. at all universities, not just the intramural research going on in Bethesda, above) is via the National Center for Research Resources, headed by Barbara Alving (but also check their Advisory Council to see if there is someone close you can lobby). Their human tissue bank resource per se is run by something called the National Disease Research Interchange. They have a number of specific tissue collection programs, but no brain bank. I don't know anything about the NIDRI or why they don't have a brain bank, but this seems like where a national brain bank should be. I do see they have private industry links and these are murky waters where NIH has gotten into some trouble before with respect to brains so I'm just not sure about that one. Personally, I wouldn't be keen on donating my Dad's brain to a company that stood to gain a profit from it. But I would be happy to donate it to an academic or government research lab that would be obliged to put the knowledge obtained into the public domain.

The Foundation for NIH (http://www.fnih.org/) board of directors is Charles Sanders, but probably your contact person there would be Amy McGuire. They have an aging program, cofunded by the McKnight foundation, I believe, and this might also be a natural alliance. The National Institute on Aging is the NIH partner for that one and I believe Richard Hodes is still the director of NIA. I still think NINDS should be a key player and Story Landis heads NINDS. Each of the institutes at NIH and NIH as a whole have boards of directors, which, again, are great places to start lobbying.

cheers, F2D

My mother is seeking urgent information on donating her dad's brain for research.

Does the paperwork need to be in place at time of death?

Please send any contact information so we can do this as quick as possible.

Thanks to anyone who can help us with this,
Frank's Grandson

F2D and Frank's grandson,
I received an email from Celia a few minutes ago. I can work on this now but I need to know the city/state of the funeral home. Yes, all details must be arranged in advance! And you need to call the funeral home to be sure they allow for brain procurement on its premises.
Robin

To all,

I was able to speak with the hospital pathologist today where F2D's father is, and got the consent forms and instructions to F2D's sister at the hospital. This was all pulled together in just a little over 2 hours, which is certainly a record for me. This was mostly thanks to a cooperative hospital pathologist and a family very committed to supporting brain research.

If this is something you are considering, please take action NOW. Don't wait until your loved one is on his/her death bed. We might not be so lucky next time in pulling it all together.

As evidenced in the case of F2D, someone's health status can change on a dime. Much better to already have the plans in place.

One thing that was very useful today is that one family member (F2D) was available to me when working out the brain donation details while another family member could be with their father. In your own situations, you might assign another family member or close friend the responsibility for being the primary contact point with regard to brain donation arrangements. Of course we don't all have the luxury of several family members investing so much time and energy as Frank's three daughters have.

Robin

When I decided to venture into the world of having the brain research done I first had to come to terms with it myself. As I have stated before, I feel strongly that it is a continuation of the care I have been giving for years. I gingerly mentioned it to our youngest dau. This is the daughter who listens to my rambling and acts as a sounding board without question unless she sees I am really pondering a problem. She accepted what I was saying without comment... letting me know it was up to me. The oldest dau lives 2000 miles away so I waited until she came home in January to discuss brain research. Her reaction was a teary positive. The middle dau. held up her hand and with a pained look on her face and holding back tears, she said, "Mother, my head is in the right place on this but my heart is not there yet" then she added that I should not go ahead without all the children knowing before hand. Our son dropped in after church one Sunday. I mentioned it to him, his answer was, "Absolutely!!". Mr B. has two sisters, one we are extremely close to, {I wonder why, her name is "Dorothy" and she is called "Little Dot"} and yes I was 17 yeaars old when his little sister was born. I mentioned it to her... She seemed proud that I would care enough about the family to do this and she said she knew I would never do any thing to exploit or harm her brother.

With all of the approval in place, I moved forward. I never leave home for post office or going to different offices etc. My business is done by our children or my dear dau.-in-law and I knew I needed help with this, proofing the paperwork, getting it in the mail and such. I decided against having the children wade through those waters with me. [foolish of me, I know, the mother still trying to protect the babies from heart ache]. I contacted a former next door neighbor to come give me a hand. This neighbor is a very intelligent "ball of fire", retired teacher type. She has been more than pleased to be my assistant throughout this. I think I have done everything I should do at this time, I haven't heard from all the participants to know if all is in readiness but I will give it a few more days and then check to find out what has been done and see if there are any more loose ends to tend to.

To anyone on this forum who has given me a hand and/or encouragement through the process, I want you to know you will always have my gratitude.

DrP

My Dad passed away about 1:20 this morning, New Hampshire time. Both my sisters were with Dad. He was comfortable, but had few words after noon yesterday. My son, my husband and I all got to say goodbye over the phone from the UK. My clever son was off school sick yesterday, but was able to track us down at the hospital here and get word through to me that my Dad was dying (in another hospital in NH). That call came while my husband was having his surgery, but he came through fine; is home now; and is doing well.

Robin, again thanks for your amazing help. Our efforts spanned 9 time zones, two continents, and four states, but everything should work out fine for getting the tissue to Mayo Jacksonville with medical records coming from the University of Michigan, where my Dad taught aquatic ecology. I do wish I hadn't waited until it was urgent, so thanks for your message to people urging them to think ahead.

I'll draft a message and e-mail Dad's friends, relatives and colleagues with the sad news after my sisters are awake in New Hampshire. I'm hoping to fly to New Hampshire tomorrow to take the yoke from my younger sister as we get my Dad back to Michigan and make arrangements for a service there. My husband and son I expect will join me there in a few days -- giving my husband a chance to heal a bit before he risks 8 hours on an airplane.

Dorthea, I had another little tear, but it was "TOL" or tears of love reading about your family coming to terms and your work to put arrangements in place. What great kids. What blessings. What grace.

all the best to you all -- you're by no means rid of me. My work with respect to my Dad's care and health may be at an end, but I expect my work in support of improving the understanding of DLB, and research, treatment and care for people with DLB is just beginning.
Franks2ndaughter.

Please except my deepest condolences in the passing of your father,May all the happier moments carry you through this sorrowful time. Your fathers release from LBD is a blessing.