You Are Making a
Difference
You’re already advancing the science of ALS. Would you consider doing more?
Brain Donation for neuroscience research into ALS has advanced the knowledge of the disease, especially in the last ten years or so. Your participation in ALL ALS will move the needle even more, and there is one final gift that can accelerate the knowledge substantially.
Why brain donation?
Brain Donation makes a profound impact on science and families.
Donating your brain allows researchers to combine the data they’ve collected about you and your ALS experience with the brain tissue you’ll later donate. It allows neuroscientists to learn so much more about how the disease progresses in the same person. It creates a rare opportunity for a deeper analysis of one person’s ALS experience. While it is incredibly valuable to science, brain donation is an option for participants in ALL ALS – it is not a requirement of the study.
Your gift of brain donation could also be helpful to your loved ones. Families routinely report feeling a sense of comfort at a very sad time. There’s something about knowing that a positive could come from a terrible loss. And it softens the moment a bit that future generations may not have to go through a terrible disease because of this final gift.
Pre-Register Here
Learn more about this critical process.
Watch this brief video for more information about brain donation.
Four Steps to Get Started
Pre-Registration
On the “Have you participated in any clinical trials?” question, answer “Yes”
When prompted to input the clinical trial information, enter “ALL ALS” under Name of Trial, your Participant ID (if known), and either city and state or name of study site for Trial Location
Complete the remainder of the form and submit
Check your email inbox for an immediate response with the subject line: “Brain Donation Next Steps”
Follow the instructions from the brain bank in this email to complete your registration. If you don’t see it, please check your all mail or junk/spam folders.
Share the notification instructions from the brain bank with your family
Once registration is complete, your brain bank will be your main source of info regarding your brain donation. Staff there will provide a 24/7 phone number and guidance about what your family needs to do when the time comes. These details must be shared with your family in advance so they know exactly how to see to your wishes.
Information for Your Family
So that you and your family can best prepare for your brain donation, these are some important process details to understand.
Your Family’s Important Role
-
Alert
if possible, alert your brain bank when the loss of your loved one is imminent.
-
Notify
The brain bank will ask to be notified quickly when the time comes, ideally within the hour. The brain bank will have provided an all-hours phone number for this purpose. If a funeral home is working with the family, contact info should be shared with both parties so they can coordinate transportation.
-
Transport
Next, the brain bank will coordinate transportation of the body to a local facility where the brain will be removed by a trained recovery specialist. Often, this can be the funeral home that the family is using; if not, another nearby facility will be identified.
-
Recovery
The brain is recovered with great respect, in a way that is not disfiguring. That means an open casket is still an option.
There is no cost to your family for donating your brain to neuroscience research in this way. They will only pay for the funeral/burial or cremation as they would have if no donation had taken place.
The brain is then shipped to one of the brain banks in the NIH’s NeuroBioBank.
-
Return
The donor’s body is then “released” to the family to proceed with a funeral, cremation, or other end of life arrangements.
About the Brain Donor Project
Our Partnership with the NIH
The Brain Donor Project serves as a single point of contact for the brain banks of the National Institutes of Health (NIH). Future donors are connected to the appropriate brain bank after completion of a simple online form on our website.
What you need to know about brain donation
Still Have Questions?
Please fill out this form and we’ll get back to you soon.
Thank You
You are making a world of difference in advancing knowledge that’ll lead to better diagnoses, treatments and cures for ALS. We couldn’t be more grateful.