• alan-larrivee

    June 5, 2023 at 7:42 pm

    Good question hope someone can answer. In the meantime you can donate your brain and spine for research. That’s what I did and they say I can keep them until I’m done with them.

    • Amanda

      June 6, 2023 at 8:48 am

      That’s what I’ve been telling the research team at Miami, “You can have my brain and body as soon as I’m done with them.” Great minds 🙂


      • deb-winters

        June 7, 2023 at 11:22 am

        As a former organ donor requestor, when I was diagnosed with ALS I checked with my former clinical team. The answer was -no- since ALS is a neurological disorder of unknown cause,  we no longer qualify as organ donors. Of course. There is always the caveat of each case is determined medically at the time of death. Another really good reason to continue research and find the answers!

  • angela-gooch

    June 7, 2023 at 8:58 am

    Hi, I am in Australia and the organ donation register has told us that the only thing my husband David can donate is his corneas.

  • meredith-reekers

    June 9, 2023 at 8:11 am


    if you are in the US, go here to start:


    this is the NIH funded brain bank and how research sites get valuable tissue like yours. My mom and I are both registered, and upon our deaths, our tissue will go to the University of Miami. They are a member research site who needs the tissue and the closest to us geographically. The UofM staff (or whichever university research site is closest to you) can explain which local funeral homes and mortuaries they work with.

    I hope this helps,

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