A Hard Choice: Deciding On Brain Donation
When my Dad was officially diagnosed with Frontotemporal Dementia, I remember wanting to see the PET/CT scans obtained by his neurologist. I wanted to see his brain and the decay building up in it’s walls. I wanted to see FTD. Now thinking back, and even writing it down, it sounds… strange. Seeing the disease isn’t going to make it any more real or any less painful, but I remember wanting to stare at it.
That’s when I made the decision to donate my dad’s brain upon his passing. And I didn’t waiver from that choice. It was important for me and knowing my dad, he would be honored to contribute to science. (He used to “comfort” me on my way to my childhood checkups by telling me not to fret as it was “just science.”) Oh, Dad!
Many of you have asked for more information about donating your loved ones brain “to science” upon their passing. First and foremost - brain donation is not the same as organ donation. Organ donors agree to donate their organs to help keep someone alive, but with brain donations, you are donating for research only. Bear with me, I hope to explain this without giving an anatomy lesson.
Next, it’s important to discuss donation with family to make sure you are all on the same page (it’s helpful if your loved one includes this in their end-of-life arrangements ahead of time, but I totally know it’s not always possible). Refer to the links at the bottom of this blog to gain more info to help you make your decision.
If you come to the decision to donate, step two should be deciding where you’d like to donate. The Brain Donor project (linked here) is a great place to start and gives you a step-by-step guide on how this all works. There are forms to fill out, medical records to acquire and registration to complete. (Note: I’ll also include more helpful links at the end, so continue reading!)
A few things to be ready for which I wish someone would have told me. You keep your brain donation team on standby when death is imminent. For example, when I got the call that Frankie was on his way out, after calling my mom, I called my contact at the Brain Support Network (that’s the company we used! Linked here).
She was my first call when my dad passed as time is essential in getting the brain out of the body (I know it’s not the most comfortable thing to think about …). Another aspect to note is that arrangements for brain donation need to be made ahead of time – so if it’s something you are considering, my advice is get it done now and be ready so it’s not a scramble at the end. Lastly, brain removal is done in a delicate way - so if you wish to have a viewing as a part of your funeral arrangements, that is definitely possible.
There is an option to receive a report of neuropathological findings – I highly suggest you opt in for this opportunity.
This is heavy stuff, guys but there are so many great resources (added below, don’t forget to check them out!) to help guide you through this part if you choose to go down this road.
I am always available to help find answers, give my advice or share my experience with you. Get in touch with me! I’m here… always.
Xx,
Rachael
Helpful LInks
NIH and Brain Donor Project have partnered and are great resources to work with together.
