Brain Bank newsletter A vital gift
My husband’s vital gift Supporting the Parkinson’s Brain Donor Appeal How lack of brain tissue is hampering research
Brain Bank newsletter
Brain Donor Appeal launched during Parkinson’s Awareness Week 2009 The Parkinson’s Disease Society (PDS) Brain Donor Appeal, to heighten awareness of the shortage of brains for Parkinson’s research, was launched during April’s Parkinson’s Awareness Week. The Appeal has really captured the imagination of the public, and we are busy responding to thousands of requests for more information on how to become a brain donor. Many people are surprised to learn that we need brains of people without Parkinson’s (control brains), as well as those with Parkinson’s. Why do we need these brains, and what role can they play in the fight against Parkinson’s? Put simply, most Parkinson’s research would grind to a halt Dr David Dexter, without control tissue Scientific Director Parkinson’s Brain Bank from people without Parkinson’s. Scientists generally need to know what is happening in a brain without Parkinson’s so that they can make comparisons with one with the condition. Such comparisons are essential if we are to develop better treatments, or even a cure.
For example, the drug levodopa has been used for many years to treat Parkinson’s. The use of this drug stemmed from the discovery that there was a deficiency of the chemical dopamine in the Parkinson’s brain. However, without knowing what dopamine levels are normal, we wouldn’t be able to identify the Parkinson’s deficiency. By studying these comparisons, clinicians then used levodopa to top up dopamine levels, and improve the lives of thousands of people with Parkinson’s. Recent research supported by the Brain Bank looked into the role of genetics in Parkinson’s. We need to understand how genes associated with Parkinson’s are formed, and how they are translated into proteins in non-Parkinson’s brains, before we can examine whether they are different in Parkinson’s brains. In this issue of the Brain Bank newsletter you will read inspirational stories about brain donors and their families. I hope this will explain why our Brain Donor Appeal, and the need for more nonParkinson’s brains, are so essential to research. Please pass this newsletter on to a friend, family member or work colleague, to encourage them to sign up to the Brain Donor Register. They can sign up by ringing 020 7594 9732 or visiting www.parkinsons.org.uk/brainbank
That vital gift of brain donation, Pam Turner When my husband, Geoff, was diagnosed with Parkinson’s early in 1985 it came as a blow to both of us. We had been married for less than two years. We knew from the outset that there was, as yet, no cure, and we didn’t know too much about 2
treatment. My childhood memory of the illness was when my granddad was told, “you have Parkinson’s and there is no treatment, no cure and very little help and advice”. It must have been pretty devastating and I have always remembered my granny and granddad trying to cope with it and not doing very well.
Geoff and I joined the Parkinson’s Disease Society, as well as the local branch here in Jersey, and we soon realised just how much information and help there was available to us. 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 the scientists move closer to this aim.
The Brain Bank was recently entrusted with arranging the donation of tissue from Mrs Norah Chatburn, a ‘control’ donor who did not have Parkinson’s when she died. Her daughter Christine Marsh remembers: “It was my Mum’s greatest wish to do what my Dad had done before her. So I was only too happy to arrange it.”
Through the years Geoff found it very difficult to cope with the condition. I was very proud that he had made the decision to donate his brain. But I was never prouder than at his funeral last October, when our Rector told the gathered congregation that Geoff had donated his brain to research into Parkinson’s. I have and always will continue to promote the idea of brain donation to the members of the Jersey Branch, and try and persuade those who are as yet undecided. Norah and Norman Chatburn
Christine’s father Norman lived with Parkinson’s for ten years, and it was five to six years after he had been diagnosed that he made the decision to donate his brain for research.
Copyright Jersey Evening Post
“My parents were a very close couple and what one did they both did, so once my father had decided to donate, my mother did too,” Christine explained.
Pam and Geoff Turner 3
When Norman died, Christine’s sister had taken care of everything. As Christine’s mother passed away in the holiday period over New Year, Christine was concerned that she would not be able to arrange the donation. However, the local PDS branch were able to give Christine the Brain Bank emergency bleep number.
“As soon as I rang, Helen the Brain Bank Co-ordinator, got back to me and arranged everything very quickly,” Christine remembers. Christine is now arranging her own registration. Her family all carry donor cards, so they were more than happy with the idea of brain donation. “Even though Mum and Dad are gone now, I feel that they are still helping people. They were a lovely and caring couple who were always helping others, and I am comforted by the fact they are still doing so.”
Denise Day Denise Day, does not have Parkinson’s, but as a result of reading the last issue of the Brain Bank newsletter, she has registered to donate her brain. ‘‘Having watched my lovely Dad suffer from this loathsome condition, I registered in his memory. I saw first hand, from diagnosis to death, how Parkinson’s wrecks lives, and 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.’’ Denise’s father, Michael, had been diagnosed with Parkinson’s at the age of 57. The family knew nothing about Parkinson’s, and when he was diagnosed, they actually thought he had a problem with his sight that was causing him to have a shuffling walk. Following diagnosis, they did a lot of research to learn more about what Michael was going through. Denise believes it is vital that there is more understanding about Parkinson’s.
“We had big problems in the nursing home in making the staff aware that, because of Parkinson’s, Dad needed to get his medication when he needed it. In the end we [the family] were insisting we gave him medication to ensure he got it on time.” Sadly, Michael died four years ago aged 67. Denise’s family are very supportive about her decision and are willing to carry out her wishes; no one in the family has any concerns about her registering to donate her brain. “I found the whole process of registering very easy to do, and I’m keen to encourage more people to do the same, especially those, like me, without Parkinson’s. “You never know if you or another member of the family might eventually get Parkinson’s. 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.”
Denise's dad Michael and mum Pamela
If you would like to share your story and reasons for registering with the Brain Bank, or tell us why your loved one decided to do so, please email firstname.lastname@example.org or call 020 7594 9732. 4
Brain Bank newsletter
Dr Kirstin Goldring reports on how lack of ‘control’ tissue from people without Parkinson’s is hampering research At the Brain Bank, we receive many requests from UK and international researchers for donated tissue. We are able to fulfil most applications. However, for a small number of requests, there has been a delay in being able to supply all the tissue required. This delay is caused by the lack of available tissue from people without Parkinson's, and while we can often arrange for this tissue to be supplied from other Brain Banks, this is not always possible. Two projects that have been slowed down by lack of available tissue include Professor Maria Grazia Spillantini’s research on alpha-synuclein at the University of Cambridge, and Professor Peter Jenner’s research at King's College, London, investigating levodopa induced dyskinesia. Professor Spillantini is investigating the relationship between Lewy bodies (clumps of proteins that can be seen in the brain of someone who had Parkinson’s) and the death of dopamine Professor Spillantini nerve cells, which cause the condition. Researchers know that the protein alpha-synuclein is present in Lewy bodies, and the team want to look at what other proteins besides alpha-synuclein are present, to establish how Lewy bodies cause and lead to the development of Parkinson’s.
Professor Spillantini needed specific parts of the brain, termed frozen sections, from the substantia nigra (one of the main areas in the brain affected in Parkinson’s). Her research needed samples
from seven Parkinson’s brains, and seven 'control cases', from people without Parkinson's. As the Brain Bank did not have enough control cases with the specific type of tissue available (as the tissue had already been used for other projects), initially we were only able to supply four control samples with the seven Parkinson’s samples. The second research project is looking at the long-term use of the Parkinson’s drug levodopa, which leads to unpleasant side effects such as dyskinesia (uncontrolled movements) in around Professor Jenner 40% of people. There is currently little that can be done to control dyskinesia, and Professor Jenner’s team are hoping to find out what causes this and other side effects and how to prevent them. Professor Jenner required 25 frozen sections from four different brain areas, from six people with Parkinson’s who had experienced severe dyskinesia, six people with fewer symptoms, and ten people without Parkinson’s. We were able to supply all the Parkinson’s cases and six control cases in 2006, but it wasn’t until 2008 that we were able to finalise the request by supplying the additional four control cases, as we did not have the tissue available. Now that we have supplied the tissue for both of these requests we are waiting to hear about the results. These studies highlight how important it is for the Brain Bank to be able to support scientists searching for a cure for Parkinson’s.
Jane Asher, President of the Parkinson’s Disease Society (below), celebrities Jeremy Paxman and John Stapleton (left) pledged to donate their brains for research during Parkinson’s Awareness Week. Jane, whose brother-in-law has been diagnosed with Parkinson’s, said: “I’ve visited the Parkinson’s Brain Bank and seen what fantastic work is going on there. Now we need a greater awareness of the benefits of brain donation so that more people come forward to register with us. Scientific research on brains both with and without Parkinson’s is essential. “It’s vital that we secure more potential donors as this will help us move closer to a cure for what can be a debilitating and distressing condition.” John Stapleton
A vital gift
Help us cure Parkinson’s join our Brain Donor Register
The Parkinson’s Brain Bank provides human brain tissue to researchers around the world who are working hard to find:
• what causes Parkinson’s • a cure and better treatments We urgently need more people – with and without Parkinson’s – to join our Brain Donor Register Actress and President of the PDS, Jane Asher, has pledged to donate her brain to Parkinson’s research 020 7594 9732
Write PDS Brain Bank at Imperial College Division of Neuroscience and Mental Health Burlington Danes Building Email email@example.com Imperial College London 160 Du Cane Road Visit www.parkinsons.org.uk/brainbank London W12 0NN Call
Change of address
Name: ............................................................................. Donor number: ................................................. Old ad dress: .............................................................................................................................................. New ad dress: ............................................................................................................................................
© Parkinson’s Disease Society of the United Kingdom, 2009. Charity registered in England and Wales No. 258197 and in Scotland No. SC037554. A company limited by guarantee, Registered No. 948776 (London) Registered Office 215 Vauxhall Bridge Road, London SW1V 1EJ