Brain Donation – Urgent as a Loss has Occurred

Our deepest condolences on your sad loss. We are honored to assist you at this stressful time.

Thank you for considering brain donation. While brains must be recovered within 24 hours of end-of-life to be viable for research, we can often coordinate the process within only a few hours, depending on the time of day and the intended donor’s location. And, with permission, we are sometimes allowed to proceed with brain donation up to 48 hours after end-of-life.

You are completing the “Urgent” form, indicating that end-of-life has already occurred. This form gathers the information needed by our brain donation case management team. Our first steps will be to (a) reach out to the cremation organization or funeral home and (b) learn the availability of a pathology provider in your area. We’ll get back to you quickly. Please immediately consult our ice protocol webpage.

Fields marked with an asterisk (*) are required. If you have difficulty completing this form, please contact us. Our staff is available by phone, except overnight.

1. Individual Completing Form
Your Name*
Your Email*
Cell Phone*
- I do not have a cell phone number
Does this phone accept texts?*
- Yes
- No
Home Phone
2. Legal next-of-kin or healthcare power-of-attorney details
Name*
How this person signs legal documents?*
First Middle (or Middle Initial) Last
Email*
Cell Phone*
Does this phone accept texts?*
- Yes
- No
What makes this person the legal next-of-kin or healthcare power-of-attorney? (check ALL that apply - there may be more than one box checked)*
- Married spouse
- Domestic partner (unmarried)
- Oldest adult child
- Adult child (but not the oldest)
- Sibling
- Sibling-in-law
- Parent
- Ex-spouse
- I am the legal next-of-kin following in this order: surviving spouse, oldest adult child, other adult child, parent, or sibling.
- I am the primary healthcare power-of-attorney (based on a legal document that the intended donor signed).
- Other - please specify below
Other
At the present time, where is the legal next-of-kin or primary healthcare power-of-attorney (if you live in a state where the HCPOA can still make after-death decisions) at the present time? We need to be able to reach this person to have consent paperwork signed.*
- At home, with access to a printer and scanner
- At home, with access to a printer and fax machine
- At home, with access to a printer and cell phone that takes photos and can text
- At a care facility, with access to a fax machine.
Please provide the mailing address to which the legal next-of-kin or healthcare power-of-attorney would like the neuropathology report sent*
Street Address City State (US only) ZIP / Postal Code
Please provide the legal next-of-kin's mailing address (so that we may send a condolence card at the appropriate time)*
Same as previous

Street Address City State (US only) ZIP / Postal Code
3. Costs
Are you aware that the average cost (payable to the pathology provider) to donate a loved one's brain in the US is $1000 or greater? Note: For several disorders (PSP, CBD, MSA, and FTD), a reimbursement grant of up to $1000 is available to families from another non-profit organization.*
- Yes, I am aware of the average cost. And I understand that Brain Support Network will be confirming for me what the cost is prior to our moving forward.
- No, I am not aware and do not want to proceed.
Are you aware that Brain Support Network requests every family we help make a charitable contribution of $750 or more so that we may help another family with brain donation arrangements?*
- Yes, I am aware and our family will make our own pay-it-forward contribution.
- Yes, I am aware and our family will request memorial donations in lieu of flowers.
- Yes, I am aware and our family will make our own pay-it-forward contribution AND will request memorial donations in lieu of flowers.
- No, I am not aware and do not want to proceed.
4. Intended Donor Information
Full Legal Name of Intended Brain Donor*
First Middle Last
Please include full middle name(s), not just an initial.
Suffix, if any
Check if applicable:
- This person has no middle name (on any government document or medical record)
- This person only has a middle initial as their legal middle name
Name used by family/friends when referring to intended donor if other than the first name
Was brain donation the intended donor's wish?
- Yes
- Probably yes, as we believe intended donor would be in support of this
- Unknown
Date of Birth of Intended Brain Donor*
Intended Donor's Diagnosis*
- Parkinson's
- Lewy Body Dementia/Dementia with Lewy Bodies
- Frontotemporal degeneration (including frontotemporal dementia, primary progressive aphasia, and semantic dementia)
- Multiple System Atrophy
- Progressive Supranuclear Palsy
- Corticobasal Degeneration/Syndrome
- Parkinsonism, atypical parkinsonism, or Parkinson's Plus
- Alzheimer's - Early Onset, diagnosed before age 65. Please give the age of diagnosis in the box that appears below. See Eligibility (FAQ 3.3).
- Alzheimer's - Family History. At least two first-degree blood relatives (parents, siblings, children) or at least two relatives in a maternal or paternal line (mother/grandmother or father/grandfather). Please give family history in the box that appears below. See Eligibility (FAQ 3.3).
- Vascular Dementia. See Eligibility (FAQ 3.4)
- Dementia - Early Onset, diagnosed before age 65. Please give the age of diagnosis in the box that appears below. See Eligibility (FAQ 3.5).
- Dementia - Family History. At least two first-degree blood relatives (parents, siblings, children) or at least two relatives in a maternal or paternal line (mother/grandmother or father/grandfather). Please give family history in the box that appears below. See Eligibility (FAQ 3.5).
- Alzheimer's or Dementia where the intended donor is not Caucasian. Please identify the race in the box that appears below.
- Normal, healthy control
- Other Neurological. Please specify below
Please identify the race of the intended donor.
Specify which family members have or have had a diagnosis or symptoms of dementia or Alzheimer's.
Specify which family members have or have had a diagnosis or symptoms of dementia or Alzheimer's.
Please specify other neurological condition:*
Brain banks are no longer accepting donations from this category. Please list any other diagnoses the intended donor has received and we will inquire about eligibility for this specific case.*
Please state which relatives have/had dementia symptoms:
5. Time of Passing Information
Have you consulted our webpage to learn how to ice the head of the intended donor? Note that if the intended donor is at a funeral home or care facility, you should request the staff help with the icing immediately.*
- Yes, we will take care of this or ask for assistance right away.
- No
Preparing Ice and Utilizing Ice for a Brain Donation
Why not?*
Are we within 24 or 48 hours of end-of-life?*
- Yes, within 24 hours. (If this is the case, there's a reasonable chance we can accomplish the brain donation. Much depends on whether you have medical records, whether the funeral home/cremation organization is friendly, and whether a pathology resource is available.)
- Yes, within 48 hours but not within 24 hours. (If this is the case, there's a lower chance we can accomplish the brain donation. Much depends on whether the intended donor has been refrigerated within a few hours of passing, whether you have medical records, whether the funeral home/cremation organization is friendly, and whether a pathology resource is available. We may have to seek permission from a brain bank.)
- No. (If this is the case, unfortunately brain donation is not possible. Perhaps you can arrange a private autopsy.)
Intended Donor's Current Physical Location*
- Private residence
- Care facility or in-patient hospice center
- Hospital
- Funeral home/Cremation organization
Select which option applies:*
- End-of-life was witnessed
- Intended donor was found deceased
At what time was the last-breath observed?*
Time*

: Hours

Minutes

AM/PM
Timezone*
At what time was the intended donor last seen alive?*
Time*

: Hours

Minutes

AM/PM
Timezone*
At what time was the intended donor found deceased?*
Time*

: Hours

Minutes

AM/PM
Timezone*
What is the pronounced, official time of death?*
Time of death*

: Hours

Minutes

AM/PM
Timezone*
Select which applies:*
- This is according to the hospice nurse, the hospital nurse, or the nurse at the nursing home (who can legally pronounce).
- This is my best guess.
Intended Donor's Current Physical Location*
- Private residence
- Care facility
- Hospital
- Funeral home/Cremation organization
Please indicate about what time the intended donor reached refrigeration; about what time bags of ice were placed around the intended donor's head; and any other details around the intended donor's passing that you believe we should know.
Please indicate about what time the intended donor reached refrigeration; about what time bags of ice were placed around the intended donor's head; and any other details around the intended donor's passing that you believe we should know.
6. Medical Specialists and Records
Approximately when was the neurological diagnosis made (year or month/year)?*
What are the names and clinical affiliations of ALL specialists the intended donor has seen for symptoms? (Consider specialists who were unable to make a diagnosis or with whom the family/intended donor disagreed about the diagnosis.)*
Do you have in your possession at the present time records from any of the specialists mentioned above?*
- Yes, I have some or all of these records in paper form (hard copies).
- Yes, I have some or all of these records in digital form (soft copies, such as PDFs).
- I have no records in my possession but am willing to obtain them.
- I have no records in my possession and am NOT willing to obtain them. I understand this means that I cannot proceed with brain donation.
Please identify what records you have (name of physician/clinic and date range).
Please identify what records you have (name of physician/clinic and date range).
The brain bank requires a good portion of medical records in advance of the brain donation. Do you have online access to the intended donor's patient portal account such that you can immediately download medical records, ask a family member or friend to immediately download these records, or immediately share the login credentials with Brain Support Network so that we may immediately download records? (As soon as clinics learn of a patient's passing, online access to a patient portal may be eliminated.) If you don't have online access to records, can you immediately call the clinic where the intended donor was seen and learn how quickly records can be faxed or emailed? Please provide detailed answers in the box below.
7. Covid-19, Hepatitis B, and HIV
In the last 30 days, has the intended donor tested positive for COVID-19 or shown symptoms of COVID-19? (Note: Brain donation can still occur even if the intended donor has tested positive for COVID-19.)*
- Yes
- No
Select whichever applies
- Intended donor has not been given a COVID-19 test in the last 30 days but has had covid symptoms in the last 30 days
- Intended donor tested positive for COVID-19 most recently on this date:
- Intended donor tested negative for COVID-19 most recently on this date:
Intended donor tested positive for COVID-19 most recently on this date:*
Intended donor tested negative for COVID-19 most recently on this date:*
Has the intended donor ever tested positive for Hepatitis B?*
- Yes
- No
Has the intended donor ever tested positive for HIV?*
- Yes
- No
8. Funeral home or cremation organization
Have you selected a cremation organization or funeral home?*
- Yes, and I have spoken with the cremation organization or funeral home within the last 24 hours about brain donation.
- Yes, and I have NOT spoken with the cremation organization or funeral home recently about brain donation.
- No
- No, a cremation organization or funeral home is not needed as we have made advance arrangements with a body donation organization.
If the intended donor is already at the cremation organization or funeral home, please contact the funeral director immediately to ask that the donor be placed in refrigeration or the head be iced. See our icing protocol.
We cannot proceed without knowing the cremation organization or funeral home involved. You will need to select a business that is cooperative with brain donation on-site. See our webpage with details. We may be able to recommend one to you, especially if you live in a large city.
Name of Body Donation Organization*
Phone Number of Body Donation Organization*
Have you already notified the body donation organization that end-of-life has occurred?*
- Yes
- No
Name of cremation organization or funeral home*
Address
City State (US only)
To begin an immediate search for a local pathology provider, we need to know the current location of the intended donor.*
City State (US only)
Do you want recommendations in this area for cremation organizations or funeral homes that are cooperative with brain donation? (Generally we are only able to give recommendations in major cities.)
- No
- Funeral homes
- Cremation organizations
See our webpage about what it means to be a "cooperative" cremation organization or funeral home.
Phone Number*
9. Hospice and Care Facility
Was the intended donor on hospice at the time of his/her passing?*
- Yes
- No
Do we have your permission to contact the hospice agency to confirm the official time of death?*
- Yes
- No
Hospice agency's name*
Hospice agency's main phone number*
Name of the hospice RN who pronounced*
Cell phone number (if you have it) of the hospice RN who pronounced*
Please select all that apply:*
- Intended donor died at a hospital or skilled nursing facility, where someone could legally pronounce.
- Intended donor was not on hospice and did not die at a care facility where healthcare staff could pronounce.
- Intended donor is considered a "coroner's case."
Was the Intended donor at a care facility at the time of his/her passing?*
- Yes, and the facility was a care home, assisted living facility, or memory care facility where staff could NOT pronounce.
- Yes, and the facility was a hospital, nursing home, skilled nursing facility, or in-patient hospice center where staff did pronounce.
- No
Care facility's name*
Care facility's main phone number*

We will only call with your permission.
In what city/state is the care facility located?*
City State (US only)
Do we have your permission to contact the care facility to confirm the official time of death?*
- Yes
- No
10. Additional Information
Optional: Provide additional information about the intended donor or further explanation of the answers given above.
How did you find out about us?*
- Google search or other web search
- Brain Support Network's Facebook page
- Facebook group post
- UCSF Memory and Aging Center
- University of Miami Brain Endowment Bank
- Mayo Clinic
- Harvard Brain Bank
- MSA Coalition
- The Association of Frontotemporal Degeneration
- Parkinson's Foundation
- American Parkinson Disease Association
- Lewy Body Dementia Association
- CurePSP
- FTD Disorders Registry
- Stanford
- UC Davis
- Cleveland Clinic
- Neurologist, other physician, or other healthcare team member
- Body Donation Organization
- Local support group leader
- Smart Patients Post
- HealthUnlocked Post
- Brain Support Network tweet
- Brain Support Network local support group member
- American Parkinson Disease Association
- Hospice
- Your local cremation organization, funeral home, or mortuary
- Friend
- Other
Other*
Please specify which organization*
Did you read about us on the APDA website or did someone on their Help Line tell you about us (if so, who)?*
Can you give us the name of the person at the University of Miami BEB? Was it Christina?*
Can you give us the name of the person at Stanford?
Can you give us the name of the person at Harvard? Was it Simon?
Can you give us the name of the person at UCSF Memory and Aging Center? Was it Athena, Liz, or Dr. Bill Seely?
Can you give us the name of the person at MSA Coalition?
Did you read about us on The AFTD website or did someone on their Help Line tell you about us (if so, who)?
Did you read about us on the PF website or did someone on their Help Line tell you about us (if so, who)?
Can you give us the name of the person at Lewy Body Dementia Association?
Can you give us the name of the person at CurePSP?
Can you give us the name of the person at FTD Disorders Registry?
Can you give us the name of the person at Mayo Clinic? Was it Dr. Dennis Dickson or Rachel?
Can you give us the name of the person at UC Davis?
Can you give us the name of the person at Cleveland Clinic?
Can you give us the name of the neurologist or other physician?
Can you give us the name of the Brain Support Network local support group member?
Can you give us the name of the local support group leader?
Can you give us the name of the hospice agency?
Can you give us the name of the cremation organization, funeral home, or mortuary?
Can you give us the name of the Facebook group or group webpage?
Privacy*
- I consent to having my information collected by BSN.
Check out our privacy policy to learn about how we protect your data.
11. Confirmation
When your form has been successfully entered into our system you will receive this confirmation message on a separate page:
CAPTCHA

1. Individual Completing Form

2. Legal next-of-kin or healthcare power-of-attorney details

3. Costs

4. Intended Donor Information

5. Time of Passing Information

6. Medical Specialists and Records

7. Covid-19, Hepatitis B, and HIV

8. Funeral home or cremation organization

9. Hospice and Care Facility

10. Additional Information

11. Confirmation