Parkinson's Advocates in Research
You can influence Parkinson's research. How? By working with Parkinson's Advocates in Research.
Display the Quilt
Display the Parkinson’s Quilt in your community to show the impact of PD on your community.
Donate Your Brain to Research
Many people with Parkinson’s and their family members are looking for ways to contribute to Parkinson’s research. In addition to participating in clinical studies, which is vital for the development of new therapies, people with Parkinson’s can choose to donate their brains to research.
Studying the post-mortem brain provides scientists with the opportunity to better understand Parkinson’s disease. While brain donation is a lasting contribution to science, it may bring up many questions and concerns for you and your family. Find out more about this important type of donation:
- Making Your Decision
- Questions to Ask
- Finding the Right Program (Brain Donation Programs around the US)
Making the decision to donate one’s brain for Parkinson’s research is a very personal one – often impacted by personal and religious beliefs and by the opinions of a spouse, family and friends. This decision is documented by one person living with Parkinson’s in her personal story, “My Last Gift” and may be helpful to you in making your own decision.
If you think brain donation may be the right decision for you, there are certain questions to ask before moving forward. Is there a brain bank in my area? Will all brain banks accept my donation? Are there any restrictions? Once I sign up, is there anything else that I have to do? Are there costs associated with brain donation?
If you are interested in brain donation, it is helpful to make plans early on and to make your intentions known to your family. To find answers to all of your questions, it is best to get in touch with the brain donation program closest to you. There are several brain donation programs that accept donations from people with Parkinson’s, but each has different requirements regarding eligibility and participation.
To find a program, you can ask your neurologist or movement disorder specialist for a recommendation. In addition, browse the following state-by-state listing. PDF is constantly working to update this list. While the information is limited, we suggest following the guidelines below and contacting a specific brain donation program with your questions since the process will vary from one bank to the next.
Name: Banner Sun Health Research Institute
Location: Sun City, AZ
Qualifications/Eligibility: The Banner Sun Health Research Institute brain donation program enrolls people with Parkinson’s from Maricopa County, Arizona. This program is funded by the Michael J. Fox Foundation for Parkinson’s Research.
Program Requirements: Each participant must visit the institute annually for a visit that includes an exam, and six hours of testing (three hours of cognitive testing and three hours spent with a movement disorder specialist). Each participant must provide a full medical history, provide annual medical history update, undergo smell testing and complete several questionnaires.
Contact Information and Instructions: Please see below for more information.
Point of Contact: Linda Vedders
Phone: (623) 875-6503
Address: 10515 W Santa Fe Drive
Sun City, AZ 85351
Name: Human Brain and Spinal Fluid Resource Center VA West Lost Angeles Healthcare Center
Location: Los Angeles, CA
Qualifications/Eligibility: This program accepts donations from people with Parkinson’s with two restrictions – it cannot accept brain donations from persons who suffer from highly contagious or neurologically transmissible diseases. There are no age restrictions.
Program Requirements: The center asks that a participant’s intent to donate be evident in his or her medical records so that all medical personnel are aware of the future donation.
Contact Information and Instructions: Interested individuals can call, email or send a note to the following address to request a donor registration packet. The Donor Entry Form is also available for download on the center’s website.
E-mail: email@example.com (Coordinator)
Phone: (310) 268-3536
Fax: (310) 268-4768
Address: VA Greater Los Angeles Healthcare System, West Lost Angeles Healthcare Center
11301 Wilshire Blvd (127 A)
Los Angeles, CA 90073
Name: Miller School of Medicine Brain Endowment Bank
Location: Miami, FL
Qualifications/Eligibility: People with and without Parkinson’s are welcome to apply for participation. Eligibility is determined upon completion of the center’s questionnaire. The questionnaire can either be completed online or mailed to the endowment bank at the address below. An application might be considered ineligible if the applicant has experienced a major stroke that resulted in paralysis or loss of speech, has/had brain cancer or has/had a severe infectious disease. This program prefers donors who reside in Florida, but will take brains from nearby states. If you live out of state, please call to discuss with program staff before applying.
Program Requirements: Each donor will be asked to speak with program staff once a year via phone. During this call, the center asks each participant to update his or her address, demographic information and discuss any new health information. No clinical exams are required, but each donor must authorize the release of his or her medical records.
Contact Information and Instructions: Interested individuals should first call to discuss the program with program staff. Once a person is ready to apply, program staff will ask that a medical evaluation questionnaire be completed.
Phone: (800) 862-7246 or (305) 243-6219 (for after-hours 24-hour service)
Fax: (305) 243-3649
Address: 1501 NW 9th Avenue, Room 4013
Miami, FL 33136
Name: Center for Alzheimer’s Disease and Related Disorders – Dementia Brain Autopsy Program
Location: Springfield, IL
Qualifications/Eligibility: Participants in this program must be seen for at least one clinical exam at of the program’s satellite clinics prior to signing up (call or see website for a listing of all satellite locations).
Program Requirements: Participants must go in for at least one clinical exam, if they have not already, at one of the Center’s satellite clinics.
Contact Information and Instructions: To find your local Southern Illinois University School of Medicine primary provider, visit (www.siumed.edu/alz/primprov.html).
Phone: (217) 545-8249 or (217) 545-8417 (during office hours) and (217) 545-8000 (after office hours, weekends)
Email: Find the coordinator in your area to email by visiting www.siumed.edu/alz/primprov.html
Address: Southern Illinois University, School of Medicine
Center for Alzheimer Disease and Related Disorders
P.O. Box 19643
Springfield, IL 62794
Name: Columbia University in the Center for PD and other Movement Disorders
Location: New York, NY
Qualifications/Eligibility: People with Parkinson’s disease who have been evaluated by a movement disorder specialist are eligible to apply for this program. This program is funded by the Parkinson's Disease Foundation.
Program Requirements: All participants must come to New York for neuropsychological testing and at least one videotaped exam. Columbia does not accept last minute donations, except from people who have been treated at the Center for several years.
Contact Information and Instructions: Call the research nurse at the number below and leave your complete name, address including zip code and your telephone number and request receive information about the brain donor program for Parkinson’s disease. It will be mailed promptly to you with instructions on next steps.
Phone: (212) 305-5779
Name: Oregon Brain Bank, Oregon Health & Science University
Location: Portland, OR
Program Requirements: N/A
Contact Information and Instructions: Please see below for more information.
Point of Contact: Dr. Randall L. Woltjer
Phone: (503) 494-0100
Address: Oregon Brain Bank, Department of Pathology
L-113 Neuropath Section
Oregon Health & Science University
3181 SW Sam Jackson Park Road Portland, OR 97239
Name: National Disease Research Interchange (NDRI)
Location: Philadelphia, PA
Qualifications/Eligibility: Adults of any age living with Parkinson’s from all parts of the US are eligible to donate. NDRI does not accept donations from a person that has an infectious disease, such as hepatitis.
Program Requirements: All interested individuals must pre-register by completing the NDRI Research Consent Form and Medical Questionnaire. The participant and his or her next of kin should sign and have two copies made. The participant and his or her family should retain one copy, and the other should be mailed to NDRI. NDRI does not ask for visits after registration, but will ask participants to keep them informed of current medical conditions or changes to the original information.
Contact Information and Instructions: Contact NDRI or visit their website to access the consent form and medical questionnaire and ask further questions.
Contact Person: Colleen Cheong, Private Donor Manager
Email: firstname.lastname@example.org; email@example.com
Phone: (800) 222-6374 (Extension 216 for Colleen Cheong); (215) 557-7361
Fax: (215) 557-7154
Address: 8 Penn Center, 8th Floor 1628 JFK Blvd
Philadelphia, PA 19103
Name: Penn Brain Bank – Center for Neurodegenerative Disease Research, University of Pennsylvania School of Medicine
Location: Philadelphia, PA
Qualifications/Eligibility: All participants in this brain donation must be a patient of the Parkinson's Disease and Movement Disorders Center at Pennsylvania Hospital/ Penn Udall Center for Parkinson's Research, Cognitive Neurology Clinic, and have been seen at least one time by one of the doctors at Penn.
The center accepts brains from people with Parkinson’s and brains from family members without Parkinson’s. The center cannot take donations from distant locations. Please call first if you have a question about whether or not your location makes you eligible.
Program Requirements: All participations must undergo annual cognitive testing, which lasts between one hour and one and a half hours. This testing can be done via a home visit.
Contact Information and Instructions:
Point of Contact: Kevin Davies, Administrative Coordinator
Phone: (215) 829-7104
Website: http://www.med.upenn.edu/cndr/donatingbrain.shtml; http://www.pennmedicine.org/neuro/services/parkinsons/index.html; www.pennhealth.org; http://www.med.upenn.edu/udall
Address: Center for Neurodegenerative Disease Research
University of Pennsylvania School of Medicine
Dept. of Pathology and Laboratory Science
3600 Spruce Street, Maloney Building, 3rd Floor
Philadelphia, PA 19104
Name: Brain Tissue Donation Program, University of Pittsburgh Medical Center
Location: Pittsburgh, PA
Qualifications/Eligibility: This center accepts participants from the Western Pennsylvania area (within a 5,200 mile radius, which extends into some areas of Ohio and West Virginia) and accepts people living with and without Parkinson’s. This program prefers participants who have previously enrolled for care in its program. Any legally competent adult or guardian may indicate during life their interest in donating brain tissue after death. Next-of-kin either of healthy individuals or of those with psychiatric disorders may give consent to donate brain tissue following the death of a loved one. The center doesn’t accept donations from individuals who are on on a respirator for an extended period prior to death and/or those who pass away due to an infectious disease.
Program Requirements: N/A
Contact Information and Instructions: Please visit the website or contact Dr. Johnston for more information.
Point of Contact: Carol Sue Johnston, Ph.D.
Phone: (412) 692-2700, (412) 624-7802 or (412) 383-8548
Address: Brain Tissue Donation Program, University of Pittsburgh – Dpt of Psychiatry
3811 O’Hara Street, Biomedical Science Tower W1654
Pittsburgh, PA 15213
Name: VCU Parkinson's and Movement Disorders Center
Location: Richmond, VA
Qualifications/Eligibility: People living with Parkinson’s or another movement disorder and individuals without any symptoms (controls) are welcome to participate, but must live within a 100-mile radius of downtown Richmond, VA, and have been previously evaluated by a VCU Parkinson’s Disease Center physician.
Program Requirements: Participants must ask next of kin to complete a consent form in advance. The family must arrange transportation with a funeral home in advance.
Contact Information and Instructions: Interested families can call, email or send a note using the contact information below to request further information and/or a consent form. Please include your name, address and phone number with the request.
Point of Contact: Paula Keeney
Phone: (804) 827-5272
Fax: (804) 827-5274
Address: VCU Parkinson's and Movement Disorders Center
Brain Tissue Resource Facility
P.O. Box 980539
Richmond, VA 23286-0441