There were many responses to my post on brain donation. I tried to answer all of you but apologize if I missed you. The following information was sent to me from Robin Riddle, CEO at Brain Support Network in California.
Robin and her team were a great help in walking me through each step of this, to make it easier for me and my family.
Most of the answers to your questions are on the website, brainsupportnetwork.org/brain-donation
1. They handle entire U.S. 3-4 brain donations per week.
2. If a brain bank doesn't specialize in PSP/CBD, then a brain donation will basically be wasted. You want to donate to a brain bank that is actually going to use the brain for research, and actually publishes research!
3. Yes, we are still operating despite covid-19. We have also done several brain donation cases where the donor had covid-19.
4. Many brain banks (such as Harvard) in the US are not operating. Two reasons -- research at university medical centers is postponed (with no resumption in sight) and medical centers/hospitals in the US are not doing brain recoveries (due to a PPE shortage and concern about covid transmission).
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journeyofjoy
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I think I missed the first post on this, but would like to add my voice in support of brain donation to help research on PSP/CBD without that help, I don't see much possibility of an effective treatment and/or cure.
I also chose the Brain Support Network to accomplish this. They were a tremendous help and with their help everything went very smoothly. I have never regretted it and am proud of my husband for choosing to do it in order to help others. The report answered a lot of questions for our family.
My husband, TJ, passed away two years ago (17th May, 2018) from PSP. His diagnosis was not diagnosed until 2nd March 2018 due to the fact that he had a fall which left him an incomplete quadriplegic. Just before his death we spoke about leaving his brain to research, but this was declined as there seems to be no research going on in Australia which was disappointing.
Sometimes it seems like 20 years since his passing and other times seems like only 2 months.
I will never come to grips with this feeling of being alone especially when in isolation due to the Corona problem. I have wonderful & close family and friends and even though they miss him, I still feel they don't understand my loss.
I know he's in a better place because it was hell on earth in the latter stages.
My prayers and thoughts are with those going through this and caring for their loved ones.
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