Brain Donation

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https://www.parkinson.org/Understanding-Parkinsons/What-is-Parkinsons/Brain-Donation

What Are the Steps of Brain Donation?

  1. Decide this is the right option for you.

  2. Register to become a brain donor through the Brain Donor Project.

  3. Match with a brain bank in the National Institutes of Health (NIH) NeuroBioBank network. Receive forms and additional information needed to finalize your registration. 

  4. Talk about your decision with your family so they can ensure your wishes are carried out. Consider using the NIH NeuroBioBank brochure for reference.

  5. Ensure your wishes are carried out by providing designated family members with the brain bank contact information. Your family will not incur any expense for the donation.

  6. Help hundreds of researchers further their Parkinson’s research.

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https://www.parkinson.org/pd-library/fact-sheets/brain-donation

 

As an organ donor, isn’t my brain included?

Brain donation is not included if you are an organ donor. You need to sign up for brain donation separately.

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https://www.apdaparkinson.org/article/brain-donation/

 

What steps can a person take to arrange for their brain to be donated for Parkinson’s research?

It is important to note that for research purposes, arrangements for brain donation need to be made before death, so that the time from death to removal of the brain is as short as possible. As soon as death occurs, there are changes that occur in the brain tissue that make it much less valuable for research. If family members decide after death that they would like to have their loved one’s brain donated, all the steps that need to take place prior to removal of the brain – including the proper consent forms, the correct transportation arrangements for the body, access to a pathologist to remove the brain (often during non-business hours) – typically can’t be arranged in time to make the brain donation a reality.

So how can arrangements be initiated during life? There are a variety of places that can assist with and facilitate brain donation. Here at the Mayo Clinic brain bank, we have a coordinator (Rachel LaPaille-Harwood, at 904-953-2439 or lapaille-harwood.rachel@mayo.edu) who assists with collecting information about the patient and then later helps with the logistics of the brain harvest and shipment, when that occurs.  A number of other academic institutions with a research interest in PD may also be willing to receive samples, especially if the patient was enrolled in clinical studies at their institution.  There are also not-for-profit organizations such as Brain Support Network and Brain Donor Project that help coordinate the logistics of brain donation to increase the number of people who are able to donate. Both of these organizations will guide you step-by-step to get you set up for donation. NeuroBioBank, the brain bank of The National Institutes of Health (NIH) partners with the Brain Donor Project to help secure donations.

It is vital to communicate with your loved ones about your decision to donate your brain and the logistics that you have pre-arranged so that they can help make the donation a reality.

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https://parkinsonsnewstoday.com/2018/11/13/parkinsons-disease-arranging-for-brain-donation/

I give you fair warning: My experience in researching and processing the paperwork to donate my brain was extremely frustrating. It was also a huge emotional roller coaster, and more than once, I was tempted to give up. It took 

almost three months from the time I started investigating my options until I received final confirmation that my request will be honored.

I believe we all struggle with accepting our mortality, PD-afflicted or not. I don’t know of anyone who looks forward to planning for their demise and what happens after, especially when it comes to things like organ donation and cremation. What if I need my body and all its parts in the afterlife? This is a thought that crossed my mind many times while I was in a holding pattern waiting for the donation organization to get back to me. Only focusing on my end goal of donating my brain with the intent of helping others kept me from quitting.

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https://neurobiobank.nih.gov/donors-how-become-donor/

 

https://braindonorproject.org/what-to-expect/