Key Questions - Brain Support Network

Please complete this form so we have the necessary details to assemble the brain donation paperwork and provide comprehensive instructions to all parties. In normal circumstances, this requires several hours of our time, assuming you’ve answered fully all the questions below.

If you have any questions, please contact us.

If end-of-life is on the horizon (hours or days away) or has occurred, in addition to completing this form, please alert Robin Riddle with Brain Support Network by email or text (650-814-0848). Please follow the icing instructions.

If you have difficulty — for whatever reason — completing this form, please contact us. Alternatives are sending us the answers via email, fax (650-233-9278) , or screen shots. Or, we can take the information by phone during regular business hours if staff is available. This form is not intended to be printed and will not display all of the required questions outside of the webpage.

1. Individual Completing Form
Name*
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*
- This person does not have an email address.
Cell Phone*
- This person does not have a cell phone.
Does this phone accept texts?*
- Yes
- No
Home Phone
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 because the intended donor has signed a legal document indicating I can make decisions if the donor is unconscious.
Will the legal next-of-kin or healthcare power-of-attorney give consent for the brain donation?*
- Yes
- I don't know (If consent is not given, brain donation is not possible.)
Alert! We are unable to proceed until we know that the legal next-of-kin or healthcare power-of-attorney will consent to the brain donation.
If death has occurred or is imminent (hours/days away), where is the legal next-of-kin or healthcare power-of-attorney? 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. (You will be asked below for the fax number at the facility.)
- Other
Other
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. Intended Donor Details
Full Legal Name of Intended Brain Donor
First*
Middle*

Please include full middle name(s), not just an initial.
Middle Initial*
Last*
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
Is 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
Month*
Day*
Year*
Does the intended donor have COVID-19?*
- Yes
- Possibly
- No
Date most recent COVID-19 test was performed*
Why did you give this answer? (check all that apply)*
- Intended donor has COVID-19 symptoms
- Intended donor has been exposed to someone with COVID-19 symptoms
- Intended donor resides in a care facility where others have COVID-19
Why did you give this answer? (check all that apply)*
- Intended donor has tested negative for COVID-19 within the last 5 days
- Intended donor has no COVID-19 symptoms
- Intended donor is living at a private residence and has had no exposure to anyone with COVID-19 symptoms for the last 14 days
- Intended donor is living at a care facility and no one at the care facility has tested positive for COVID-19 for the last 14 days
- Intended donor is living at a care facility and no one at the care facility has had COVID-19 symptoms for the last 14 days
Is the intended donor married?*
- Yes
- No
If the intended donor's spouse is not listed above as the legal next-of-kin or healthcare power-of-attorney, why not?
Do you plan on a viewing for the intended donor? A viewing is possible. It's best we know about the family's wishes in advance.*
- Yes
- Maybe
- No
Has death already occurred?*
- Yes
- No
Please consult our webpage to learn how to ice the brain.
Date of death*
Time of death*

: Hours

Minutes

AM/PM
Timezone*
Note that the brain must be recovered within 24 hours of death. If you have given us less than four hours to accomplish the brain donation, the chances of success are low. In that case, be sure to send us an email and text (650-814-0848).

If you are beyond this deadline, we suggest you email us about what autopsy resources might be available. Often an autopsy can cost between $2500 and $6000.
4. Diagnosis and Diagnosing Physician
Donor's neurological 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:*
Please give the age of diagnosis by an MD*
Specify which frototemporal degeneration disorder*
- FTD
- FTDbv
- PPA
- SD
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.*
Name of diagnosing physician*
What was the diagnosing physician's specialty?*
- Neurologist
- Movement Disorder Specialist
- Psychiatrist
- Primary Care Physician
What is this physician's clinical affiliation, if any? What is this physician's clinic/office location and contact info?
Clinic Name
Street Address
Street Address
City/State*
City State (US only)
Phone Number
Fax Number
Approximately when was the diagnosis made? (Year or year/month)
Year
Month
What are the names and clinical affiliations of any additional specialists the intended donor has seen for symptoms?
5. Funeral Home or Cremation Organization or Whole Body Donation
Does the intended donor plan to donate his/her whole body?*
- Yes
- No
Has the advance paperwork been completed for body donation?*
- Yes
- No
Have you recently doublechecked to be sure that this body donation organization is accepting donors in your geographic area during the COVID-19 pandemic?*
- Yes
- No
Name of Body Donation Organization*
Phone Number*
Name of Funeral Home or Cremation Organization*
Street Address
Street Address
City/State*
City State (US only)
Phone Number*
Name of Funeral Director involved (if you know it)
Cell Phone Number of Funeral Director (if you know it)
6. Intended Donor's Current Physical Location
Does the intended donor live at a private residence (such as the family's home)?*
- Yes
- No
What is the intended donor's home address?*
Street Address Address Line 2 City State ZIP Code
If death has occurred, where is the intended donor?
- At this home address
- At a funeral home (or cremation organization)
In what type of care facility does the intended donor live?*
- Assisted living or memory care
- Skilled nursing
- In-patient hospice
- Hospital
Please give the name and contact details for the care facility:
Facility Name*
Street Address
Street Address
Facility City/State*
City State (US only)
Facility Phone*
Facility Fax Number
Best Facility Fax Number
Name of Best Contact at Care Facility*
Direct Phone Number of Best Contact at Care Facility
Email Address of Best Contact at Care Facility
What has the care facility said about when end-of-life may occur (hours, days, weeks, or months away)? If you don't know, we encourage you to ask your care facility.
Is the legal next-of-kin or healthcare power-of-attorney able to visit the intended donor at the care facility at the present time (despite COVID-19)?*
- Yes
- No
If death has occurred, where is the intended donor?
- At the care facility
- At a funeral home (or cremation organization)
- At the hospital
7. Hospice
Is the intended donor receiving hospice care?*
- Yes
- No
We will share comprehensive brain donation instructions with the hospice agency. (You can find generic instructions here.) Please share detailed information for the hospice agency.
Hospice Name*
Hospice Phone*
Name of Hospice Contact*
Specify what sort of contact this is*
- Hospice nurse or case manager
- Hospice social worker
- Hospice director
Phone Number of Hospice Contact*
Email Address of Hospice Contact*
Other hospice contacts, if known -- names, direct phone numbers, and email addresses
What has the hospice agency said about when end-of-life may occur? If you don't know, we encourage you to ask your hospice agency (because it's part of their role).
8. Costs
Most likely, Brain Support Network has shared with you how much, if anything, the funeral home or cremation organization you have selected will charge for expenses related to the brain donation. Does your family agree to pay these expenses?*
- Yes
- I don't know
Most likely, Brain Support Network has shared with you how much the pathology service or specialist will charge for the pathology work related to the brain donation. Does your family agree to pay these expenses?*
- Yes
- I don't know
Most likely, Brain Support Network has shared with you that we ask every family we assist with brain donation arrangements to endeavor to make a charitable contribution of at least $500.*
- Our family will make our own pay-it-forward contribution.
- Our family will request memorial donations in lieu of flowers.
- 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.
9. Instructions Disclosure
Are there additional family members (such as adult children or siblings) who the legal next-of-kin or healthcare power-of-attorney wants us to copy on our detailed instructions for brain donation (sent via email)?*
- Yes
- No
Name*
Relationship to Intended Donor*
- Daughter
- Son
- Friend
Is this person also a healthcare power-of-attorney for the intended donor?*
- Yes, primary
- Yes, secondary
- No
Email*
Cell Phone
- Add an additional family member
Name*
Relationship to Intended Donor*
- Daughter
- Son
- Friend
Is this person also a healthcare power-of-attorney for the intended donor?*
- Yes, primary
- Yes, secondary
- No
Email*
Cell Phone
- Add an additional family member
Name*
Relationship to Intended Donor*
- Daughter
- Son
- Friend
Is this person also a healthcare power-of-attorney for the intended donor?*
- Yes, primary
- Yes, secondary
- No
Email*
Cell Phone
10. Privacy
Do we have the permission to share all of the answers given above and Brain Support Network's detailed brain donation instructions with these parties -- care facility (if any), hospice agency (if any), pathology service or specialist, funeral home or cremation organization, body donation organization (if any), brain bank, and any family members listed above?*
- Yes
- Yes, with these exceptions
- I can't say as I am not the legal next-of-kin or healthcare power-of-attorney
Exceptions*
Alert! We are unable to proceed until we know that the legal next-of-kin or healthcare power-of-attorney will give permission to share these details about the brain donation.
Exceptions
11. 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? Was it Liz?
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.
12. Confirmation
When your form has been successfully entered into our system you will receive this confirmation message on a separate page.
Notice! Saving and continuing later means that potentially private and sensitive data is stored on the Brain Support Network server for 30 days.

Save and Continue Later

1. Individual Completing Form

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

3. Intended Donor Details

4. Diagnosis and Diagnosing Physician

5. Funeral Home or Cremation Organization or Whole Body Donation

6. Intended Donor's Current Physical Location

7. Hospice

8. Costs

9. Instructions Disclosure

10. Privacy

11. Additional Information

12. Confirmation