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A Call to Action

Dr David Lingiah

Recently President Obama was awarded the Nobel Peace Prize. While many people said he does not deserve it others have no objection to the choice of recipient. The President himself accepted it, whether he deserves it or not, as a call to action.

This is the key. As a call to action, he is prepared to forge ahead to ensure peace in all his negotiations with world leaders. There are so many unmet needs in the world; there are so many areas where brave people are being called upon to rise up and meet the challenges head on. We are so happy in our comfort zones that we are slow or unwilling to take unconventional steps and decisions. We are so attached to our bodies that we are slow to sacrifice part of it as in the case of organ donation. However, whenever there is a desperate need there are always people willing to make the ultimate sacrifice.

At one time people were slow or not prepared to give blood. Now this is a common practice. When a close family member needs an organ transplant, often a member of the family volunteers to give his/her organ; son or daughter gives to mother or father or vice versa. Very often strangers come forward to donate an organ such a kidney, liver etc to someone. Very often we read of such stories in the press. Every time this helps to raise awareness of the need to give selflessly so that others might benefit. This call to action is needed more so now with respect to brain donation to enable scientists to understand Parkinson’s diseases and the Alzhemer’s.

Donating one’s brain is not so popular. Apparently it is quite acceptable to give blood or a kidney to others; but one’s brain is associated with a lot of issues such as fear, against one’s religion or as if the dead person will need his entire organ intact before he is cremated or buried.

Recently even this fear or stigma or wrong belief is being overcome. More people in high profile public life are stepping forward to donate their brains. This is a call to action.

I came across several stories of ordinary people who have donated their brain for research over the internet. People from all walks of life are signing up to the Parkinson's Brain Donor Register and pledging to donate their brain. Over 1,000 people have already signed up for the Parkinson's Brain Donor Register but we desperately need more donors.

Parkinson's Brain Bank

The Parkinson's Brain Bank is the UK's largest human brain bank dedicated to Parkinson's disease. It is based at Imperial College London and is funded by the Parkinson's Disease Society (PDS).

Dr David Dexter
Scientific Director, Parkinson's Brain Bank

"The Parkinson's Brain Bank is helping uncover the causes for Parkinson's and this moves us closer to a cure. There is every possibility that research made possible by us will lead to the next big breakthrough in Parkinson's."

Some stories in public domain are given here as illustration.
       Pam’s story

"When my husband, Geoff, was diagnosed with Parkinson's in 1985 it came as a blow to both of us. We had been married for less than 2 years. "It was in about 2002 when, hearing about brain banking, Geoff said: 'I think we should do this'.

"Although we both realised that a cure might not come in time to help Geoff, we wanted to play our part in helping scientists move closer to a cure." Geoff found it difficult to cope with Parkinson's. I was very pleased that he had decided to donate his brain. But I was never prouder than at my husband's funeral last year when our Rector told the congregation about Geoff's decision."

Denise's story

Denise decided to register to donate her brain as a result of reading the BainBank newsletter. "Having watched my lovely dad Michael suffer from Parkinson's, I saw first hand, from diagnosis at just 57 to his death, how Parkinson's wrecks lives."I wanted to do anything I could to help with research. After all, my brain will be of no further use to me when I die, but it might help others fight Parkinson's. "I found the whole process of registering with the Brain Bank very straightforward, and I'm keen to encourage more people like me, without Parkinson's, to do the same.” It doesn't matter if my donation may help future generations of our family, or a total stranger. I just don't want anyone to go through what my dad did."

Christine's story

My husband Martyn developed Parkinson's in his 30s and we both signed up for the Parkinson's Brain Donor Register as soon as we heard about it.
"I don't have Parkinson's myself - but it is very important that people without the condition join as well. Scientists have to compare the brains of people with Parkinson's to brains that are not affected by the condition. This helps them understand what is going wrong and how to fix it.

"My whole family are behind the idea of brain donation – both my sons have also registered. I think everybody should think about donating their brains and helping scientists find a cure for Parkinson's."

Michael's story

My mother Joan had Parkinson's and donated her brain when she died. She was an independent and resourceful woman who always made it clear that she wanted to donate to the Parkinson's Brain Donor Register." On the day she died, I told the family of my mother's expressed wish. The family was not sure whether to do anything, as she had said it some time ago. I told them that is the point – my mother told us so we could do something when the time came.

"The brain donation was quick – only a few hours - and the Parkinson's Brain Bank took care of everything. It did not inconvenience the family and it was not evident that an operation had taken place to retrieve the brain.

"I think it is very important that people become brain donors – like my mother. I will be donating my brain and I will be encouraging other family members and friends to do the same."

David Blunket,

Mr Blunkett is vice-president of the Alzheimer's Society

This high profile individual recently pledged his brain for research. The news item said: The Sheffield Labour MP is backing a £2m scheme encouraging more people to allow their brains to be used for research after they die. Dr Chris Morris, from the Brains for Dementia research brain bank at Newcastle University, said donations were vital in helping to find a cure. He said: "Much of what we know about the brain, how it works and the treatments we currently have for dementia, comes from research on donated brain tissue.” Brains from people without dementia are particularly important as they help us work out the difference between healthy older people and people with dementia."

Brains for Dementia jointly funded by the Alzheimer's Society and Alzheimer's Research Trust, is coordinated by King's College London and has centres in Newcastle, Cardiff, London, Manchester and Oxford.

Mr Blunkett, Labour MP for Sheffield Brightside, said: "I hope to be using my brain for a good while longer yet, but I'm pleased to know that it may help people in the future when I no longer have need of it." The society's head of research, Dr Susanne Sorensen, said it was vital to examine human brains - rather than those of animals - to enable comparisons between those of people with and without dementia.

A YouGov poll revealed that a third of 2,021 adults surveyed did not know it was possible to donate their brains. Donations 'vital' declared Sir Terry Pratchett, who as patron of the Alzheimer's Research Trust has led a high-profile campaign to increase awareness of the illness.

There is definitely a call to action here. We don’t need to be Nobel Peace Prize Winners to donate our brain for a much needed cause. We can be buried or cremated without our brain. Leave it behind; you won’t miss it.
This is an individual decision. President Obama has given us all a challenge whether to continue promoting peace or to be engaged in any other worthy cause that we wish to take up individually. Are you being challenged to champion any action? Then you deserve a Prize. But don’t wait for it.