Research Opportunities - Brain Endowment (Donation)
The information on this page is for reference and educational purposes. There is no substitute for seeing a doctor.
Why you need to think about donating your loved one's brain upon death...
Brain donation will provide families with a definite diagnosis. No doctor can fully know an accurate diagnosis until an autopsy is done. A pFTD and their family need to talk about donating the brain to help research to find why FTD is occurring and to find a cure or preventionfor future generations. The pFTDs probably would not want to see their children and grandchildren having to go through this, and most likely neither do you.
Most research centers will take the brain out for no charge, but you need to prepare for that day. You need to have the proper paper work done and everyone who is involved ready. Several of the websites below offer information on how to prepare.
Please think about donating the brain.
Research Centers that can help you
When you have decided to donate find the nearest center to the pFTD. Ask the research center the basic questions. Some of these questions will be answered on their website.
- Do they provide the removal of the brain free of charge?
- Do they provide pay for the transportation fees?
- Do they provide a diagnosis free of charge?
- What forms need to be filled out?
- Talk to someone at the brain bank and make sure you know everything they will do when the pFTD passes away. The last thing you need is any hidden surprises.
If you cannot find a research center near you, try contacting some of the larger research centers, such as the Mayo Clinic. Some have research money to pay for the removal of the brain and transportation.
What If It's Not Alzheimer's
© 2003 by Lisa Radin and Gary Radin
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Chapter 8
Pages 123-138
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Association of Frontotemporal Dementia (Website) |
No information was found on this website about this topic. |
Pick's Disease Support Group (Website) |
http://www.pdsg.org.uk/Newsletters/latest.htm |
University of California, San Francisco (Website) |
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Family Caregiver Alliance (Website) |
No information was found on this website about this topic.
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National Institutes of Health (Website) |
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 The Northwestern University in Chicago offers the Brain Endownment program for you to donate your loved one's brain after death. At the bottom of the page are more links about this program.
http://www.brain.northwestern.edu/mdad/brainendowment.html
http://www.brain.northwestern.edu/ppa/brain.html
General Procedures
The link below is to a brochure (pdf format).
Brain Autopsy Brochure (pdf) |
From the Mayo Clinic
Brain Donation Information
Jeff,
Yes, we do accept brain donations from individuals with FTD and other dementias as long as you are willing to sign a release of medical records. We need the release in order to compare your clinical records with our neuropathologist's findings. I have attached some more information on our brain donation program. If you decide to participate, we provide your family with a copy of the autopsy report for their records. All costs associated with brain donation are paid by our grant. Please let me know if you have any further questions or are interested in our program.
Sincerely,
Laura Brown
Movement Disorders Clinic
Mayo Clinic Jacksonville
(904) 953-7229
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From the University of Alabama in Birmingham Alabama has a Brain Donation Program
http://main.uab.edu/adc/Templates/Inner.aspx?pid=61773 |
The Harvard Brain Tissue Resource Center has been established at McLean Hospital as a centralized resource for the collection and distribution of human brain specimens for brain research. Research over the past decade has shown that the study of human brain tissue is essential to increasing our understanding of how the nervous system functions. Most recently, postmortem human brain research has played a significant role in the development of a genetic test for Huntington's disease as well as a treatment for Parkinson's disease.
www.brainbank.mclean.org/ |
 The Alzheimer's Society in the United Kingdom offers a great website on research centres for brain tissue donation. It is a very impressive compiled list.
//www.alzheimers.org.uk/
After The Diagnosis
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The Brain Behavior Center of the University of Pennsylvania accepts donation from patients who live within a 3-hour drive of Philadelphia.
www.med.upenn.edu/bbl/programs/donation/ |
The Prince of Wales Medical Research Institute accepts brain donations in Australia.
http://www.powmri.edu.au/research/pdda/braindonat.htm |
The Department of Psychiatry at the University of Pittsburgh has established a brain tissue bank to which brain tissue can be donated at no expense.
http://www.tnp.pitt.edu/pages/donationpg_mb.htm |
The Taub Institute and Alzheimer’s Disease Research Center at Columbia University and Columbia Presbyterian Medical Center deals with brain donations.
http://www.ec-online.net/Knowledge/Articles/braindonation.html |
The Silberstein Aging and Dementia Research Center at the New York University School of Medicine will take brain donation only from patients that they have seen.
http://aging.med.nyu.edu/adrc/programs/autopsy.html |
Boston Unversity School of Medicine's Alzheimer's Disease Center has a brain donation program.
http://www.bu.edu/alzresearch/research/memory/hope/brain.html |
Butler Hospital Memory & Aging Program provides a brain donation.
http://www.memorydisorder.org/braindonation.htm |
The National Prion Disease Pathology Surveillance Center provides this web page about doing autopsy for CDJ patients.
http://www.cjdsurveillance.com/resources-autopsyfaqs.html
+11/04/06 |
The Alzheimer Research Forum website offers this web page about different Brain Banks that will take Alzeheimer's diseased patient. You can call one of them if they are close to you and see if they can help you and your family with doing a donation.
+11/16/06 |
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The Emory Alzheimer's Disease Research Center does do brain autopsys for
research purposes. Information is available:
http://med.emory.edu/ADRC
+11/16/06 ()
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