Organ Donation and Autopsy

[Guest guest]

Hi :

The one that knows alot about organ donation is Barb (kmcrae)

and I'm sure she will be posting to you later today. I came across this site and maybe it will be of help to you. I hope so , you've been alot of help to me in the pass .

Hugs Vera

Organ Donation

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With the help of individuals with PD and their families, we are working hard to identify PD genetic risk factors as the first step towards improved PD treatment and prevention.

Organ Donation

The Udall PDRCE at Duke team is investigating the genetics of Parkinson's disease. Our researchers have launched a novel series of research projects, utilizing techniques from cancer research, to examine which genes act together to predispose an individual to the development of PD. We need individuals with Parkinson's disease who would like to donate their brain tissue to research at the time of death. Brain tissue donation is essential to this research effort.

Udall PDRCE Autopsy and Brain Program Hulette, M.D., DirectorThe Udall PDRCE is initiating an Autopsy and Brain Program to retrieve human brain tissue for use in Parkinson's disease research. The program coordinator will work with patients, families, neurologists, primary care providers and pathologists. All tissue will be catalogued and stored in the Udall PDRCE Brain Bank.

To learn more about supporting the Parkinson's disease research effort through organ donation, please contact the program coordinator, Rita Jewett, R.N. by telephone (800)283-4316 or by e-mail rjewett@....

Rita Jewett, R.N.

Udall PDRCE at Duke

Duke University Medical Center Box 3468

Durham, North Carolina 27707 USA

Tel: 919 419-5353

Fax: 919 401-0166

email: rjewett@...

[Guest guest]

Yes, Vera, I did intend to put my two cents in about brain tissue

donations. We live in Southern California, so arrangements were not that hard

to make, but they were somewhat complicated and had to be in place well

before Ken's death because we wanted the tissue sent to Mayo, and there was a

four hour window after death during which the tissue could be collected. This

would have been no problem if he had died in the hospital, but we wanted him

to die at home, and our local Coroner had said he would not cooperate if the

death took place at home. First we contacted Mayo and signed appropriate

papers. Then we contacted the Brain collection center in Los Angeles and

signed appropriate papers for them to collect the tissue and send it on.

Also, since Ken was on Hospice, we knew the day before that he would probably

die that night. So, I visited the Mortuary and arranged for them to come as

soon as the nurse called them and to be open for someone to collect the

tissue in the middle of the night. Mayo sent a special preserving fluid by

special air to the collecting agency in Los Angeles. Ken died at about 2AM. I

immediately called the Hospice Nurse who came and declared him gone. She

called all the appropriate agencies, and the body was picked up within the

hour. The brain was harvested and on its way to Minnesota within four hours,

and I heard later in the same day that it had arrived safely and in good

condition. Everything had to work like clockwork for this to take place and

it did. There was no monetary cost to me, although it must have been a pretty

expensive process. I wanted it to go to Mayo because of the MSA work they are

doing, and after all that, they determined that Ken didn't have MSA at all! I

guess that knowledge was somewhat helpful too since he had so many of the

classic symptoms while he was alive, but there was always the amazing (for an

MSA patient) responses to Sinemet and Aricept and the lack of swallowing

problems.

I hope this helps. If you want to do this, you should investigate how

it can be handled in your community and get all the paper work done in

advance and then be prepared to move quickly once the patient has died.

Good Luck. It has been very good for my peace of mind to know that we

were able to follow Ken's wishes in this.

Barbara

[Guest guest]

Hello ,

Regarding brain donations . . .

Check out the webpage for the American Brain Banking Network at

http://www.brainbanks.org/ . Follow the links on this page for some

background information.

Also, they provide a complete worldwide listing of facilities and contact

information for people interested in making a brain donation at

http://www.brainbanks.org/brain_ba.htm

Hope this helps.

Rehm

Digest Number 1672

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