Brain Donation – Urgent as a Loss has Occurred

Our deepest condolences on your sad loss.

Thank you for considering brain donation. While brains must be recovered within 24 hours of death to be used for scientific research for a cure, we can often coordinate the process within only a few hours, depending on the time of day and the intended donor’s location. Please consult our webpage to learn how to ice the head of the intended donor. Brain donation is still possible at this time despite COVID-19.

We are sorry for the stress you are under. You are completing the “Urgent” form, indicating that end-of-life has already occurred. If end-of-life has not occurred but is thought to be imminent, complete this other form. If you are beyond the 24 hour time limit, we suggest you ask your funeral home or cremation organization about arranging for a private autopsy. Information about arranging for a private autopsy is also available on our Brain Autopsy Resources page.

We need some information from you quickly so that our brain donation case management team can begin processing your request. Fields marked with an asterisk (*) are required fields. Our first steps will be to (a) reach out to the funeral home or cremation service and (b) learn the availability of a pathology specialist in your area. Then, we’ll get back to you.

If you have difficulty — for whatever reason — completing this form, please contact us. Alternatives are sending us the answers via email or fax (650-233-9278). Or, we can take the information by phone during regular business hours if staff is available.

We are honored to assist your family.

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 is likely to be more than one box checked)*
- Married spouse
- Domestic partner (unmarried)
- Oldest adult child
- Adult child (but not the oldest)
- Sibling
- 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 healthcare power-of-attorney but I am not the legal next-of-kin. The intended donor lives in a state where the healthcare power-of-attorney makes organ donation (or autopsy) decisions for the intended donor. (If you are not the legal next-of-kin and are uncertain of your state's laws, ask your funeral home or cremation organization before answering this question.
Where is the legal next-of-kin (or healthcare power-of-attorney, if you live in a state where the HC POA can still make after-death decisions) at the present time? We need to be able to reach this person to have him/her sign the consent paperwork.*
- 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 specialist) to donate a loved one's brain in the US is $1,000?*
- Yes, I am aware.
- No, I am not aware and need more specific cost information before proceeding.
Are you aware that Brain Support Network requests that every family we assist with brain donation arrangements endeavors to make a charitable contribution of at least $500?*
- 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 with make our own pay-it-forward contribution AND 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).
- Normal, healthy control
- Other Neurological. Please specify below
Specify what family members have had an Alzheimer's diagnosis or symptoms
Specify what family members have had a Dementia diagnosis or symptoms
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:
Did the intended donor have COVID-19 at the time of death or in the past?*
- Yes
- Possibly
- No
Date of Test*
Result of Test*
- Positive
- Negative
Brain donation can still occur even if the intended donor has tested positive for COVID-19.
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 hours of end-of-life?*
- Yes
- No
We are sorry but we are beyond the 24-hour time limit and cannot proceed with brain donation. Information about arranging for a private autopsy is available on our Brain Autopsy Resources page.
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
Are there any details around the circumstances of passing that you would like us to know?
6. Funeral Home or Cremation Organization
Have you selected a Funeral Home or Cremation Organization?*
- Yes
- No
- No, a funeral home or cremation organization is not needed as we have made advance arrangements with a body donation organization.
If the intended donor is already at the funeral home or cremation organization, 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 funeral home or cremation organization 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 Funeral Home or Cremation Organization*
Address
City State (US only)
Phone Number*
7. Hospice and Care Facility
Was your family member 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:*
- Family member died at a hospital or skilled nursing facility, where someone could legally pronounce.
- Family member was not on hospice and did not die at a care facility where healthcare staff could pronounce.
- Family member is considered a "coroner's case."
Was your family member at a care facility at the time of his/her passing?*
- Yes
- 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)
8. Additional Information
Message
How did you find out about us?*
- Google search or other web search
- UCSF Memory and Aging Center
- Harvard Brain Bank
- MSA Coalition
- The Association of Frontotemporal Degeneration
- Parkinson's Foundation
- Lewy Body Dementia Association
- CurePSP
- FTD Disorders Registry
- The Parkinson's Institute
- Stanford
- Mayo Clinic
- UC Davis
- Cleveland Clinic
- Neurologist or other physician
- Brain Support Network's Facebook page
- Brain Support Network tweet
- Brain Support Network local support group member
- Local support group leader
- Facebook group post
- Smart Patients Post
- HealthUnlocked Post
- Yahoo! Group Post
- Hospice
- Funeral home or cremation organiziaton
- Friend
- Other
Other*
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 The Parkinson's Institute?
Can you give us the name of the person at UCSF Memory and Aging Center?
Can you give us the name of the person at MSA Coalition?
Can you give us the name of the person at The Association of Frontotemporal Degeneration?
Can you give us the name of the person at Parkinson's Foundation?
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 funeral home or cremation organiziaton?
Can you give us the name of the Facebook group or group webpage?
Can you give us the name of the Yahoo! 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.
9. Confirmation
When your form has been successfully entered into our system you will receive this confirmation message on a separate page.

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. Funeral Home or Cremation Organization

7. Hospice and Care Facility

8. Additional Information

9. Confirmation