A difficult subject

[Christine47]

I asked a question of Robin Riddle of CurePSP. Brain donation is presented as an option for PSP and CBD patients in the USA and they will facilitate it happening.

This was my question: A brain is donated, diagnosis is determined. Then what? How do they use the tissue to aide in finding a cure? Clearly it is too late for the donor.

Her answer: Truth is that a cure is far away. Closer is understanding the causes and figuring out a treatment.

Example - my dad's brain was one of 1K confirmed PSP brains that were used in a genetics study. Researchers found three new genes highly associated with PSP. (Finding not possible w/o brain donations.) Researchers are looking into all of these genes to try to understand the association with PSP. Can we modify these genes at all?

Same thing with CBD genetics. We discovered through brain donation many new genes highly associated with CBD. (BTW, Brain Support Network was responsible for a high percentage of those CBD brains studied.)

Researchers ONLY know there's something called Richardson's Syndrome in PSP from brain donations. We also know that those with PSP-RS have far more rapid brain atrophy than those with Alzheimer's. And we ONLY know there's tau in the PSP brain because of brain donation. Pharmaceuticals companies interested in a treatment for AD can far more effectively study experiemental medications in PSP-RS patients. Those clinical trials are only possible through discoveries made through brain donation. If a treatment is found for PSP, chances are high that the same treatment can be used for CBD.

Yes, clearly too late for the donor. But lots of brain donors, like my father, wanted to do something to fight back against the disease in hopes that others in the future would not have to be challenged by it.

[allany]

I intend to donate my brain for research purposes. In fact it's been on my mind for some time and after reading your message, I will be doing that today ( monday) as soon as the sunrises. I hope more of us suffering for PSP or any degenerative neurological condition can do the same

[BindiLeech]

Ditto Allany..... and because I am in Australia I am not sure where to go or what to do regarding this (besides letting my family know my wishes). I will find out however!!!!!!!!! X x x x

[vlh4444]

My husband, who died a month ago, donated his brain to the University College London brain bank. It was quite easy to do. About two years ago he said he wanted to do it and we filled in some forms at that stage. On the day he died I told the funeral directors that that was what we wanted to happen and they arranged it all. I signed another form to say that I was still happy for it to happen and he was collected from the funeral directors and then returned there until the funeral. Although it needed to be done as soon as possible, it is not like a transplant donation where time is completely critical.

Derek was always very interested in any research and was enrolled in the Prospect Study being undertaken by Dr Huw Morris and Dr John Woodside. He was keen to do anything he could to help advance the science.

It is a difficult subject, but all I can say is that the practicalities of the donation were not distressing for myself and the children. We are all pleased we could ensure that his wishes were carried out and hope his brain might help further a better understanding of this horrid disease and others.

I don't know what exists in US and Australia but I'm sure there must be similar ways of donating which CurePSP can advise about.

Vicki

[honjen43]

A lot of research is possible as a result of tissue or organ donation. We never discussed this topic sadly, so my man did not donate any tissue, either from spinal fluid or brain donation. Lumbar puncture was deemed too dangerous when it might have been done. As a result, his death certificate states he died of Parkinsons disease, which was diagnosed and treated, whereas CBD was just a calculated guess by a caring neurologist who was specialising in rare brain diseases.

If you feel you, as someone affected by PSP or CBD, or care for someone who is affected, that it would benefit research to donate brain or tissue, then investigate fully the steps and details required to do this! There will be precise protocols and timeframes.

I thought about it too late to be able to communicate the suggestion to my man, and i regret it was not possible to add to researched data, and at the same time, to know if the diagnosis was correct, and whether any genetic connection that might affect our children.

Sorry, that got a bit involved in the middle, but i hope you get my meaning.

It does not help those suffering now, but it may help draw a picture of the disease, and help to find a treatment and/cure in the future. There is some great research being done out there!

Thanks for bringing this topic to the forum, Christine47 .

[41273416a]

I couldn't agree more with those who already replied. No, none of this research will help us, already with PSP, but hopefully it will find the clue to PSP to help others in the future. Donating my brain is something easy to do. For those wanting open caskets when the time comes, people will not know your brain is missing,there aren't any tell tale signs. Heck, my brain is missing now a good deal of the time.!!!Mary B.

[vsm0001]

Bravo for you father! It is only through that selfless act that we can find a cure for the unknown disease that affects our loved ones. It is my husbands wish to also have his brain donated for this exact reason. He has CBD. Diagnosed 2012.

[Christine47 in reply to vsm0001]

As an addendum to Robin's information, there is this. "Particularly with CBD, the diagnostic accuracy is so low that CBD is not usually confirmed through brain donation. Indeed, one person's husband had PSP, someone else's wife had Alzheimer's, another wife had Lewy Body Dementia, and someone's mother had Parkinson's, and on and on." This is from a CBD site.

[vsm0001 in reply to Christine47]

I see that often, PSP / CBD mimic each other so. Right now I just see what changes happen with him and still lean toward the CBD, not that I'm a DR. or scientist. He doesn't have that stare that is talked about with PSP. But I do believe that he may have Parkinson's along with, his trembling is becoming more severe and lasting longer.

[Dizz58]

My Mum has eventually decided to allow brain donation. She used to say that she wanted to be whole when she met my Dad in heaven. My 'much tougher' sister pointed out to her that she had asked to be cremated! They think that CBD and PSP brains may unlock the key to treating all tau disorders, it's so important, I'm very proud of my Mum it's a selfless act.

[abirke]

Well said. Thank you. We are brain donors

[Kathryn]

I can only agree with the positive comments about brain donation. My husband and I had discussed this before he died and the process was very straightforward. He thought that it was his way to contribute to finding out more about PSP. I have also left my brain as they want healthy brains as well ( it is still healthy at the moment!! ). We got a very full report from the brain bank which confirmed the diagnosis of PSP

Kathryn

[kryste]

My Aunt Bev is also donating her brain to UCSF