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e-newsletter FEBRUARY 2012

The EPDA hopes you are looking forward to 2012 as much as we are, for the year marks our 20th anniversary – and to celebrate we're embarking on perhaps our busiest year yet. And we'd like you to help us make it a year of change and increased awareness for Parkinson's. Besides a new-look website and magazine to help celebrate Parkinson's World Day in April, we have also made a promotional film and are very busy planning the first ever European Unity Walk. In addition, our well-established awareness-raising projects – Life with Parkinson's and Move to Change – are moving forward this year too. We hope you are equally excited about what the future may hold, and we look forward to working with you over the coming months. As ever, we welcome your news, thoughts and views so please get in touch at



European Unity Walk A DATE FOR YOUR DIARY

Don't forget to put the EPDA's inaugural European Unity Walk firmly in your diaries. The walk is taking place on Friday 28 September in the heart of Amsterdam, the Netherlands, and aims to raise awareness of the disease on all levels. Branded materials and resources will be available for all interested parties to help spread the word in the coming weeks, along with a dedicated website that will provide everything you need to know about the event, including how to register. Don't forget that the EPDA's 20th anniversary conference will be held the following day at the Krasnapolsky Hotel. More news of these exciting events will appear in subsequent EPDA Updates and issues of EPDA Plus.



The results of the second part of the EPDA's Move for Change online campaign have been compiled and analysed, and it is planned that a report of the findings will appear in an eminent European journal later this year. The survey, which ended last October, asked whether people with Parkinson's (PwPs) "have access to support services". Meanwhile, the third – and final – part of the Move for Change survey will go live on 11 April, World Parkinson's Day. The final part of the campaign will determine whether PWPs "receive continuous care" and "take part in managing their illness". Please ensure you complete and return the form in order to contribute some truly unique data that will help change the way PwPs are managed. The survey will be live until the end of October.

EPDA website relaunch EPDA Film footage Life with Parkinson's

Get ready to delve into the new-look EPDA website when it relaunches later this year. The EPDA is continuing its significant brand refresh in 2012 to help celebrate its 20th anniversary year – and a major part of this initiative involves a complete overhaul of its main website. With a new design, updated content and a streamlined visual and strategic approach, the site aims to go live on World Parkinson's Day (11 April). More details will be available in the next Update (early April) and EPDA Plus (early May). Meanwhile, the next issue of the EPDA's flagship publication will also enjoy a new look to help celebrate World Day and the EPDA's landmark year. The summer issue of EPDA Plus will feature a special 20th anniversary feature.

The EPDA has produced a short promotional film to coincide with its many other 20th anniversary celebrations in 2012. The film charts the EPDA's journey over the last 20 years, and focuses on why it started, what it has done, what it is doing now and where it is headed. The film (and various additional clips from key EPDA stakeholders) targets many audiences, including EPDA member organsiations (and those groups that work with them), EU policymakers and national MPs in Europe, the treatment industry and healthcare professionals, the media and the wider European public. You will be able to see the film in a few weeks on the EPDA's website and its other social media outlets including YouTube and Facebook – so look out for it!

The booklets for the first two parts of the EPDA's Life with Parkinson's awareness campaign have been translated into yet more languages. The booklet for the first part of the campaign, which focuses on highlighting the importance of early diagnosis as well as advanced disease management, is now available to download (as PDF documents) in Dutch, French, German and Maltese from the EPDA website. It is also due to be translated into Hebrew and Russian before the end of the year. Meanwhile, French and Spanish versions of the second part of the campaign, which discusses non-motor symptoms, will be available soon. Part 3, which focuses on accurate diagnosis and the importance of the right treatment for the right person at the right time, is due to be launched at the EPDA's 20th anniversary celebrations in Amsterdam on 29 September.


The EPDA has added a new section to its website that features a broad range of research papers dating from 1991 to 2011. The new section, entitled Focus on Parkinson's, brings together a series of publications by the same name, with each issue containing original contributions as well as a selection of the latest research at that time. Each article can be individually downloaded in order to select topics of interest, or you can download complete issues. Visit for more details.



The NEUROSTEMCELL (European consortium for stem cell therapy for neurodegenerative disease) project – a four-year co-operation between experimental and clinical researchers – is attempting to create clinical trials that focus on stem cell therapy for neurodegenerative diseases. The project is supported under the EU's Seventh Framework Programme (FP7) to the tune of €11.9 million, and the project's latest development involves the efficient transformation of human pluripotent stem cells (PSCs) into dopamine-producing neurons. The plan is to advance the use of these PSCs and help develop new therapies for neurodegenerative diseases. NEUROSTEMCELL's objective is to develop safe and validated cells and clinical grade reagents that can be used in clinical trials; however, drug discovery is its ultimate objective. Click here for more information.

EU-funded researchers have developed a robot that is able to help neurosurgeons perform keyhole brain surgery. The robot has already been tested for its accurate performance on dummies, and the researchers believe it can be used to help physicians treat patients for Parkinson's, epilepsy and Tourette's syndrome. The robot has 13 types of movement compared to the four available to human hands, while it also boasts 'haptic' feedback – physical cues that allow physicians to assess tissue and perceive the amount of force applied during surgery. The ROBOCAST (Robot and sensors integration as guidance for enhanced computer assisted surgery and therapy) project, which is funded under the EU's Seventh Framework Programme (FP7), involves experts from Germany, Israel, Italy and the UK.

A recent EUnetHTA Collaboration conference on health technology assessment (HTA) in cross-border healthcare in Europe highlighted the growing importance of patient organisations within the European political environment. The event, held last December in Gdansk, Poland, aimed to develop the current and future policymaking role of the Collaboration – with the end aim being to develop a more efficient European-level HTA process. Patients were well represented by the European Patient Forum: its delegates presented on the benefits patient organisations can bring to the process as key stakeholders in the HTA process, and explained that budget holders must be more aware that patients are both experts in their disease as well as payers.

European Commission EC GETS ACTIVE

The European Commission has launched a series of short videos to describe its work in helping to ensure the safety and quality of medicines in all EU member states. According to a BBC report last June, one in seven people in the UK buy their medicines online, and one in four UK family doctors report having treated people who bought medicines online for adverse drug reactions. The short clips show that medicines bought from unregulated websites have a high chance of being falsified, counterfeit or substandard. This initiative follows the Directive on Falsified Medicines, which was approved by the European Parliament last year. Click here for more information.



The European Commission is inviting people from all over Europe to get involved in its new European Citizens' Initiative. The scheme invites citizens to propose legislation on matters "where the EU has competence to legislate”. A proposal has to be backed by at least one million EU citizens and must come from at least seven out of the 27 member states. A minimum number of signatories is required in each of those seven member states. The new website provides information on all potential citizens' initiatives, and explains the rules and details on how to launch an initiative. While there are high hopes that the petitions will help address the European Union's 'democratic deficit', not all member states have implemented the legislation and some fear the procedure will be too bureaucratic to live up to its ambitions. Click here for more information.


Tom Isaacs Neurological Alliance Parkinson's UK

The science that is needed to cure Parkinson's does exist – yet new treatments are not prioritised. That is the opinion of Tom Isaacs (pictured), president and co-founder of the Cure Parkinson's Trust, who has claimed the bureaucratic process to try and translate research breakthroughs into readily available medicines is far too long. He explained that the existing clinical trial structure was better suited to making small improvements in current treatments, but since they only managed the symptoms of the condition, it will be some time before a cure is available. He added that the solution to the problem was not just to "improve the standard of care but to reduce the need for care by focusing on pioneering new drugs with the potential to cure the conditions”.

The NHS in the UK is facing a "time bomb" if it does not get to grips with neurological conditions such as Parkinson's disease, campaigners say. The Neurological Alliance (NA), which represents 70 groups – including Parkinson's UK – said a combination of poor services and rising case numbers was causing huge problems. It also accused the NHS of having its "head in the sand". In response, the UK government said it recognised that more needed to be done for people with neurological conditions. The NA's comments come following a report by the National Audit Office, which criticised the current standards of care in the UK. The NA has called for a neurology 'tsar' to be appointed to champion the cause at a national level – as has happened with stroke, cancer and diabetes.

The number of people with Parkinson's (PwPs) in the UK is set to rise by 28% by 2020, according to new research by Parkinson's UK. "Our research shows that there are currently 127,000 PwPs in the UK – this is around 7,000 more than previously thought," said Parkinson's UK's director of research and innovation Dr Kieran Breen. "But by 2020, we believe that number will rise to 162,000 – an increase of 28%. Over the past year, our research team has analysed the General Practice Research Database (GPRD) to make sure our figures are as accurate and up to date as possible." The GPRD is the largest database of anonymous long-term medical records from GPs.

WHO Barbara Thompson

The World Health Organisation's (WHO) essential medicines department is under threat due to a serious shortage of funds, according a recent letter published in the Lancet. The department receives little publicity compared with other WHO departments (such as those that combat higher-profile diseases like malaria) despite its importance: it puts together and updates the essential medicines list, which tells every health ministry in every corner of the world – however tiny their budget – which drugs they should be getting for their citizens. According to the letter from Mohga Kamal-Yanni of Oxfam, pain guidelines have been put on hold and work monitoring drug safety is under threat. As a result, Oxfam is calling on the WHO to put the department on a secure financial footing.

The Federation of Neurological Societies has launched a new online magazine. NEUROPENEWS, which is available free of charge for everybody, will be updated on a regular basis and a complete new issue will be available on the first day of each month. Those already on the EFNS mailing list will automatically receive an email with information on the latest issue, but you will also get access to RSS feeds, receive information on new articles and follow the forum discussions by subscribing to NEUROPENEWS. There will also be magazine information via Facebook and Twitter. The magazine features four new sections including discussions, interviews and views from opinion leaders. Interaction with the editors and authors as well as other users will be possible for registered users. Click here for more information.

The Wellcome Foundation has financed a film about a well-known UK jazz musician's struggle of living with Parkinson's. The film, entitled Playing with Time and directed by respected director Mike Dibb, is an attempt to improve awareness and understanding of what Parkinson's is about and to remove stigma. It follows the life of Barbara Thompson and her husband (renowned drummer Jon Hiseman), and their experiences dealing with the daily reality of the disease. One internet blogger called it "one of the most remarkably optimistic – but also truthful – and informative films one can see”. The film also deals with the complexities of the UK NHS health system and of getting the right treatment for the right person.


Mediterranean-style diet DIET 'HALVES' PD RISK
A Mediterranean-style diet rich in fruit, vegetables and fish can almost halve the risk of Parkinson's, according to new research. The study revealed healthy eating habits slashed the risk of the brain disorder by up to 46%. The findings, published in the European Journal of Neurology, support earlier studies that suggest diet could have a key role to play in preventing the disease.
Noise Pakin Gene Civitas' ARCUS inhaler platform

A Swedish-based study has shown that a weak, electrical noise signal may be able to alleviate Parkinson's symptoms. Scientists at the Sahlgrenska Academy in Gothenburg, Sweden, are now planning to collaborate with NASA to test a portable noise stimulator on people with the disease. Recent research has highlighted the fact that signals in the nervous system need to contain just the right amount of background noise to work properly. As the brain ages, the levels of background noise decrease, and this decrease is believed to be significantly greater when dopamine nerve cells are lost, as is the case in Parkinson's. Scientists using a rat model of Parkinson's have now investigated for the first time how the chemical signalling systems in the brain are influenced by external sensory noise. Results suggested a motor improvement of 25%.

Researchers at the UK-based University of York have found a new way to identify potential young people with Parkinson's. The team found that tremors and mobility problems associated with the disease – known as bradykinesia – may be due to a defect in people's nervous systems. Dr Kieran Breen, director of research and innovation at Parkinson's UK, said the research "may be the key to treatments that can slow or even stop Parkinson's in its tracks”. The findings were made as researchers into juvenile Parkinson's, which affects people under the age of 40, studied the effect of parkin – one of the genes that cause the disease – on the larva of fruit flies.

Pharmaceutical firm Civitas Therapeutics has reported good results from the use of its drug inhaler with patients inhaling a Parkinson's treatment. Civitas said that early results of a Phase 1 clinical trial for CVT-301 – its inhaled version of levodopa – showed that by breathing it into the lungs, sufficient amount of the compound was found in the blood plasma of patients. Additionally, the company said, CVT-301 was shown to be safe and well tolerated. The drug is delivered via Civitas' ARCUS inhaler platform, which allows large-molecule drugs and biologics to get into the bloodstream in as controlled a manner as an injection but without the unpredictable nature of taking such compounds orally.

Rotigotine Patch Hospital bed European Parkinson's Disease Standards of Care Consensus Statement

Otsuka Pharmaceutical has announced that it has submitted a manufacturing and marketing approval application for the dopamine agonist transdermal patch, Rotigotine Patch. The company says its treatment, which is used to treat Parkinson's and restless legs syndrome, is the world's only dopamine agonist in once-daily transdermal patch formulation. Meanwhile, Otsuka and UCB announced that they have agreed to join forces on the therapeutic area of central nervous system disorders and to discontinue their collaboration in immunology.

Researchers have found that some groups of Parkinson's patients are more likely to die than others. Researchers at US-based Washington University medical School claim that people with Parkinson's (PwPs) have a death risk almost four times higher than people without the disease; nearly two times higher than people with colorectal cancer, ischemic heart disease or stroke; and almost the same as people who have broken a hip or experienced a heart attack. Parkinson's deaths are also higher if dementia or other characteristics also exist, they said. In addition, the six-year study showed that Parkinson's patients with dementia die more often than other PwPs, while women with Parkinson's died less often than men, and Hispanics and Asians with the disease die less often than other races that have Parkinson's.

Researchers at the US-based Michigan State University have demonstrated that slow-wriggling alpha-synuclein proteins are the cause of aggregation, which is the first step of Parkinson's. The results are published in the Proceedings of the National Academy of Sciences. "There are many, many steps that take place in aggregation, but we've identified the first step,” said the team. "Finding a method to fight the disease at its first stage, rather than somewhere further down the road, can hopefully increase the success rate in which the disease is treated.”

PHARMA AGREEMENT Magnetic Resonance Imaging

Treatment companies Santhera Pharmaceuticals and Ipsen have announced they have renegotiated their fipamezole licensing agreement. Santhera regains the worldwide rights to the development and commercialisation of fipamezole, its first-in-class selective adrenergic alpha-2 receptor antagonist for the management of levodopa-induced dyskinesia in Parkinson's. Under the renegotiated terms, Ipsen returns its rights for territories outside of North America and Japan in exchange for milestone payments and royalties based on future partnering and the commercial success of fipamezole.

This is a special mailing for European Parkinson's Disease Association (EPDA) members, associated parties and sponsoring bodies. If you have received this email in error or would like to be removed from future mailings, please contact the EPDA. We apologise for any unintended intrusion.
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