Providing Diagnosis and Research for those suffering from Neurodegenerative Disorders
What is the Brain Donation Program?
Dr. Irene Litvan, Director of the Movement Disorder Center, has created a partnership between UC San Diego and the Mayo Clinic in Jacksonville, FL. This partnership allows patient’s suffering from neurodegenerative disorders the opportunity to receive a post-mortem brain autopsy and final diagnosis at no charge.
Who Can Donate?
Anyone suffering with a degenerative neurological disorder can donate.
Commonly accepted diagnoses are: Parkinson’s disease (PD), Progressive Supranuclear Palsy (PSP), Corticobasal Degeneration (CBD), Multiple System Atrophy (MSA or Shy-Drager Syndrome), Vascular Dementia (VaD), Frontotemporal Dementia (FTD), and Creutzfeldt-Jakob Disease (CJD)
Steps to Take
Enrolling in the Brain Bank Donation Program is easy. Follow the steps below or contact your UCSD Movement Disorder Specialist for help enrolling.
1. Request a Brain Donation Packet
. This packet contains all the necessary information and paperwork you will need to help in making this important decision. Contact your UCSD Movement Disorder Specialist for this information or download it at: https://www.psp.org/ineedsupport/resources/
*Click on the “Download Our Brochure” link
2. Enroll. The first step is to register with the Brain Bank by completing the questionnaire (pg. 4) and mailing or faxing it to the Brain Bank Coordinator at the Cure PSP Brain Bank at Mayo Clinic in Jacksonville, Fl.
Cure PSP Brain Donation Program for Diagnosis & Research on PSP
Eloise H. Troxel Memorial PSP Brain Bank
4500 San Pablo Road
Jacksonville, Florida 32224
Brain Bank Coordinator
Phone: (904) 953-2439, M-F, 8am-5pmEST Fax: (904) 953-7117, available 24/7
Finding a local pathologist. The UCSD Movement Disorder Center will help local individuals locate a pathologist. Please contact Lisa Damron at (858) 822-5873 for assistance within San Diego County. Dennis Dickson, M.D. at the Mayo Clinic in Jacksonville will help facilitate locating a pathologist for individuals residing outside the Greater San Diego area. Dr. Dickson can be contacted at (904) 953-7137.
Link to CurePSP Paperwork and Consent Forms
Frequently Asked Questions (FAQs)
Q. How do I make a decision?
A. Make your decision freely. First, learn as much as you need to know. Discuss the options with the people you trust will follow your wishes. Make your own personal decision and explain that decision to the people you trust.
Q. Who may request an autopsy?
A. Legally, the next-of-kin or guardian is the person who makes the decision. If the spouse is deceased, the oldest child is considered next-of-kin. In some states the deceased may arrange for an autopsy with a living will.
Q. Is a complete autopsy performed?
A. No. In most instances where a degenerative brain disorder is suspected, only brain tissues need to be examined for diagnosis; however, a complete autopsy is often recommended for atypical cases, where examination of the spinal cord, muscle, and nerves may be informative.
Q. Can I have an open casket?
A. Yes. Harvesting brain tissue for diagnosis and research leaves no disfigurement. Only on close inspection would anyone know that an autopsy had been performed.
Q. Are there any religious considerations I need to think about?
A. The majority of the world religions support autopsy if there is a hope that the knowledge gained will improve the lives of others in the future. Many world religions recognize the mandate to health and the call to compassion. This gift of hope may provide relief for those who have symptoms now and may also provide a healthier future for generations to come. Please consult your religious leader to learn how your religion interprets brain donation.
Need more information?
If you are interested in learning more about
the Brain Donation Program, please
Lisa Damron, Program Coordinator
UC San Diego, Movement Disorder
Center La Jolla, California
Tel (858) 822-5873