brain donation

[Diggerandsam]

does anyone in the uk know of a particular brain bank researching PSP, to which I can donate my brain on death?

[Bergenser]

Cambridge Brain Bank do research into Frontotemporal Dementia and related disorders. cuh.nhs.uk/our-research/get...

My mother-in-law donated her brain, as there had been some uncertainty about her "atypical Parkinson's" diagnosis. While at one point it was thought she had "Richardson Steele" i.e. PSP, the neuropathology gave us the answer that she had "just" regular Parkinson's Disease.

My husband has been saying from his diagnosis that he wishes to likewise donate his brain - though "only when I've finished using it myself".

It's a difficult subject. We strongly believe this is one of the ways we could contribute to increased knowledge and understanding of these conditions. 🌻🫂

[Marazion in reply to Bergenser]

Oxford Brain Bank John Radcliffe Hospital is where we’ve set it up for mum. Thank you for considering this.

[Diggerandsam in reply to Bergenser]

Thank you

[Diggerandsam in reply to Bergenser]

thank you

[CJFreckles]

Hello, so there are local ones in each area. For my dad we had the help of Kings college who were amazing with the process. Very kind and sympathetic and kept me up to date of each step and they worked with the funeral directors to help make it all happen. They will automatically liase with the hospital for the procedure. There is a but of paper work to fill but if that's something you'd loved one wished to do it's a worth while cause for this disease. X

[Diggerandsam in reply to CJFreckles]

Thanks. I’ve been in touch with a local teaching hospital but they don’t seem to be particularly studying the brain, and I would prefer, if possible, to donate to an establishment dedicated specifically to PSP research

[Bergenser]

ftd.neurology.cam.ac.uk/res... I've struggled with the links - hopefully this explains the link between Cambridge Brain Bank and research into PSP - specifically with James Rowe as a leading researcher.

[Diggerandsam in reply to Bergenser]

Thank you

[tina7mahal]

Hello. My mum had PSP. We donated my mum's brain to Queen's Square Brain bank in London. We felt it was important for future research into the condition.'The Queen Square Brain Bank for Neurological Disorders (QSBB) holds a unique archive of brains and tissue donated by individuals with neurodegenerative disease and neurologically normal controls.'

They were very helpful and caring. Making initial contact was easy.

They liased with the hospital after mum passed away, and did whatever was required. They acted very promptly and there was no delay in our making funeral arrangements.

After a couple of months we received a report which actually confirmed PSP.

This is the details of the link below.

ucl.ac.uk/ion/research/rese...

[redkilt]

Dr. Diane Swallow ([e-mail]) at Aberdeen University researching PSP and brain donation was whom we contacted when my brother wished to donate his brain. She came to see him and kept in touch until the end at which time brain donation service was faultless.

[Diggerandsam in reply to redkilt]

Thanks redkilt - may be one to consider as I live up north, in Yorkshire

[redkilt in reply to Diggerandsam]

I would suggest definitely worth contacting - at the time this programme was very supportive. Best of love to you

[Erniebarrel in reply to redkilt]

This is really helpful thank you. My mum has PSP and before she got ill she wanted to donate her body to medical science. She no longer has capacity, but me and my dad have POA and want to honour her wishes. Due to the rarity of her illness we have been looking for somewhere that would benefit after she goes.

[Diggerandsam in reply to Erniebarrel]

Thanks

[redkilt in reply to Erniebarrel]

I could not agree more. This is a dire disease and both my brother and family were so pleased something could come from donation which hopefully would help research. xx

[Diggerandsam]

thanks very much Tina

[David750]

Hi Diggerandsam, please contact the PSP Association Helpline (pspassociation.org.uk). They can let you know the nearest reception centre to you for a donation.

[Diggerandsam in reply to David750]

Thank you

[littlin]

Our loved ones brain was donated to The Oxford Brain Bank. They told us it would be 18 months gor the report. Thankyou for considering donating

[Diggerandsam in reply to littlin]

Thank you

[CathyHide]

Please be aware the brain banks also want brains from people not suffering from PSP as controls. I donated my husband's brain and have set up for my children to donate my brain for brain research.

[Diggerandsam in reply to CathyHide]

That’s a very good point