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elle
18th September 2011, 00:42
I am aware that financial donations are vital to (mnd) which i fund, i have now signed relevent papers to donate my brain & spine to research when my time comes, i feel strongly this will enable research towards finding a cure to end this devastating disease for future victims, that alone is "priceless!!!!" i am wondering has anyone else thought or done the necessary arrangements?

Norman
18th September 2011, 16:30
Hi Elle.
Thats a trully great gesture, thankyou, I believe that the more that is known, the closser we will be to a cure.Do you think the MND Ass or a delagated unit should hold a central database, of all the suffers, where everybody with a Diax of MND should be registered. You never know we may all have some common link.

Countyboy
18th September 2011, 17:06
Hi Elle and Norman.
I presented my neurologist with a living will written by me and witnessed by two neighbours. In it I stated my end of life decisions, including donation of body parts for research and teaching purposes. It was the first he had seen. Now as a result, all new patients are asked to fill in a living will form provided by the clinic. I think this is one of the better donations one can give. Since then I have been told that at least three registries have been set up throughout the country. It is vital that your wish to donate body organs including Brain and Spinal Cords is registered. If you are not registered as a doner then your family may object and your wish to donate be denied.
Best wishes,
CB.

wheelchairking
18th September 2011, 19:54
Yes well done Elle.
4/5 years ago I explored on the internet and the best I came up with was at Keele University where my body would be used for general medical research, medical training etc. Valid though this is, I would rather that I was used for mnd research which could help provide eventual cure/ treatment for the disease. Could you possibly post where you made the arrangement so I could do the same.

miranda
18th September 2011, 20:09
I did all my paperwork via the MND Clinic at John Radcliffe Hospital Oxford. Tel; 01865 231893 I was given 'Donor Information' sheets explaining the Thomas Willis Oxford Brain Collection, then had to get consent forms signed. I made sure all the family were happy with my decision. My GP has a copy of all the relevant info.

elle
18th September 2011, 20:41
Hi Norman and Countyboy, thankyou for your replies intresting to learn about registering, as my prosedure entailed me getting in touch with a professor Pamela Shaw in Sheffield via e-mail, explaining my personal wishes after discussing it with my son, prof P. Shaw contacted me by letter and stated i must notify my GP, mnd nurse, my neuro, family and funeral director of my wishes they all have copies of my final wishes also Sheffield will take care of all costs of transportation commuting my body to and from York as some neuroscience/teaching hospitals put the transportation costs onto the family, i've not been asked anything reguarding registeration i'm wondering if it is to do with what part of the country your from? i have an appointment with professor Shaw soon i will discuss registering, thanks again for the INFO xellex

Countyboy
19th September 2011, 15:47
Hi Elle, Thank you for pointing out the people who need to be informed of your donation details. Something I completely forgot yesterday when writing my reply. I think I am registered at Kings in London, but things have changed since I made my donation known. This is something I will follow up to ensure I am still on the register.
Best Wishes,
CB.

Robyn Copley-Hirst
22nd September 2011, 14:27
For anyone searching for information on this, we do have an information sheet on our main website. I'll link it below:

Helping MND research through tissue donation (http://www.mndassociation.org/search_clicks.rm?id=81&destinationtype=2&instanceid=243757)

Hope that helps,

Robyn

luce
22nd September 2011, 21:59
My mum signed the donation forms for both spinal cord and brain a long time ago. We have given a copy of the form to the GP, neurologist, all professionals involved, ambulance service and her chosen funeral director (last person ideal as they need to move quickly when necessary and take mum where she needs to be).

It took a while for us to find out what to do to start the process off. A difficult subject but mum is happy to know it is in place.

regards
Lucy

elle
23rd September 2011, 03:09
Exactly how i feel as well Luce.reguards elle x

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