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Anyone know how to donate your brain for epilepsy research?

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    Anyone know how to donate your brain for epilepsy research?

    I decided to start looking into getting my ducks in a row to prepare to make anatomical donations at the end of my life. No impending doom, just lining up my ducks!

    First is donation of any and everything that is transplantable. Secondly, is the donation of my very seizure rich brain to help with research into finding new treatments and a cure for epilepsy.

    Hoping to find that I will be able to do both.

    Anyone know ay information that would be helpful?

    Thanks!

    Sissylou

    #2
    Hi Sissylou,

    Welcome to the forum! My best advice to you is to check with your neurologist to find out about donating your brain for research. I have already signed papers to donate
    organs. Whatever you do be sure to put it in your will so everyone knows what you want done. Here's wishing you well and May God Bless You!

    Sue

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      #3
      ((((((Sissylou))))))

      Welcome to BrainTalk! Glad you found us!

      I'm so sorry that you have a "seizure rich" brain. Not the kind of wealth anyone wants to accumulate. We're here to listen and support, if you want to share your story.

      I Googled "brain donation for epilepsy research" and found these:

      United States

      Harvard Brain Tissue Resource Center:
      Only registered and activated users can see links., Click Here To Register...

      New York Brain Bank at Columbia University:
      Only registered and activated users can see links., Click Here To Register...

      NICHD Brain and Tissue Bank:
      Only registered and activated users can see links., Click Here To Register...

      International

      Canadian Brain Tissue Bank:
      Only registered and activated users can see links., Click Here To Register...

      Australian Brain Bank Network:
      Only registered and activated users can see links., Click Here To Register...

      Brain Donation Epilepsy Society/UK:
      Only registered and activated users can see links., Click Here To Register...

      Bless you in this decision to help others.

      Love & Light,

      Rose
      Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

      Comment


        #4
        "My" university hospital wants mine -- they are getting it. They are getting all of me. I signed their paperwork and my attorney put it in my will.

        Comment


          #5
          Howdy Sissylou!

          I second Porkette's suggestion...
          Talk to your neurologist!
          Dave
          Ego sum quis ego sum quod ut est quicumque ego sum - Popeye
          www.howdydave.com

          Comment


            #6
            Organs donation

            Hello porkette, i just read your replay and i am surprised for what you done, its very usefull move you made! You will probably save somones life! God bless yoU!

            Comment


              #7
              Hi Goves,

              Thank you for your kind words! I want to donate my organs because I saw a young man say my Uncle life when he had to have a heart transplant. I figured why not save someone
              else or help them out because when I pass away most of the organs are just destroyed and I would rather help save a life. Take care and May God Bless You!

              Sue

              Comment


                #8
                If one is considering the monetary issues involved with after death expenses, one might want to consider becoming a body donor.

                As a body donor, the entire body goes to a facility -- usually a medical school -- to be used as a cadaver in gross anatomy.
                After some students get acquainted with you and human anatomy via dissection for a year or two, the facility will cremate the body and then either return the remains to the family or dispose of them as per your specifications.
                Last edited by howdydave; 01-25-2018, 08:55 AM.
                Dave
                Ego sum quis ego sum quod ut est quicumque ego sum - Popeye
                www.howdydave.com

                Comment


                  #9
                  Choosing to give your cerebrum and tissue to medicinal research is a standout amongst the most essential choices you can make throughout everyday life. Helping research along these lines is an extremely liberal and important blessing, and the choice must be something you are content with. It is likewise something that should be talked about with those nearest to you before you settle on any choice.

                  Comment


                    #10
                    NIH has a path for donations

                    [Been away from the forum for a while, though I still see a number of familiar member names. We trust all are doing well.]

                    After much searching, contacting, calling, etc., and admittedly with some good feedback, we were advised that in-state is the generally the easiest path for a donor. This means out-of-state transport of human tissue can be a challenge.

                    Finally, we stumbled (I don’t recall how) upon: Only registered and activated users can see links., Click Here To Register...

                    They (NIH) put us in touch with an in-state facility that shall accept a “brain”. It was all quite simple after the contact was made and a few brief forms were competed. Now all members of the family carry a simple card with “reach” numbers to expedite the contact with the in-state receiving facility and to organize the activities for the safe and expeditious transfer of the brain tissue.

                    Attached is the contact card for the donor. It says (over), but I show both sides.

                    Bonne chance
                    NIH Organ Donor Contact Card.jpg
                    Last edited by Ted-T; 01-24-2019, 09:05 PM.

                    Comment


                      #11
                      I carry a card that says my body - all of it - belongs to the medical school attached to the hospital that preformed the surgery to remove a tumor and stop my seizures. I've paid a local funeral home to carry my body to the school if they still want it (They won't accept overly fat bodies). Also paid for is cremation of my body if it is not sent to the school. Everything is paid for and programmed and not refundable. Whew.

                      Comment


                        #12
                        In our case, receiving institution shall perform "most" tasks.

                        In our situation, the brain is the only organ that is being donated.

                        As our designated mortuary does not support the activity to remove the brain (the mortuary only performs removals of corneas)) we already know that the receiving institution shall make all arrangements to remove the brain and to bring the remains to the mortuary for the planned funeral services.

                        We mention the forgoing as the institution receiving the tissue has overcome similar hurdles and has the means to effect a satisfactory donation.

                        Afterwards there shall be a religious service at a Catholic Church followed by interment at a National Cemetery as I am a Navy veteran.

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