When we get a chance to talk with these future donors, the sentiment is nearly universal – if it saves one family from suffering with the terrible disease that’s impacting their own family, people are happy to do it. Happy. That’s the word. People don’t frame brain donation as a sacrifice in any way. It’s more of an act of kindness than anything else. And it floors us that contributing to a cure is something folks seem almost grateful to be able to do.
We weren’t sure exactly what to expect when we started The Brain Donor Project nearly five years ago. Gene Armentrout, our inspiration had passed the year before, and we’d learned so much about brain banking in the meantime. But we weren’t scientists, and thanks to the very patient neuroscientists (we’re looking at you, Michelle Freund and Anna Taylor at the NIH) we took a leap to try and help. When forming the non-profit, some people asked what we anticipated in terms of results. Fair question as part of building an entity. But who the heck could make a projection on something as unknown as brain donation? We thought attitudes may be shifting as data showed more open-minded-ness on end-of-life decisions as well as an eagerness to advance science. Still. If you’d told us then that more than 11,000 people – half of whom struggle every day with a neurologic disease or disorder themselves – would volunteer to be a brain donor, we’d be bowled over. And we are. To all the future brain donors out there – from the bottom of our hearts…please hold this emotion in yours. It’s sincere gratitude and admiration being sent in your direction. Hope you can feel it.