Well, it's Parkinson's awareness month again – a time when people with Parkinson's and their families and patient organisations all over the world work hard to raise the profile of the disease in their own communities and further afield. Like many of you, the EPDA is busy being proactive and you can read about many of our plans in this edition of EPDA Update. As you'll discover, the EPDA's hectic schedule extends well beyond April as we celebrate our 20^th anniversary year. We hope you'll appreciate that many of our current initiatives are dedicated to building a stronger European Parkinson's 'community' – whether it's encouraging our friends to write letters into EPDA Plus, completing our final Move for Change survey or joining us for the first ever European Unity Walk, we want you to help us achieve our mission in becoming the voice for Parkinson's in Europe. Have a wonderful April!

The EPDA's European Unity Walk for Parkinson's website will go live on Monday 23 April. Visit www.europeanunitywalk.com to register for the momentus, one-mile procession, which will take place in the heart of Amsterdam on Friday 28 September. We hope each of you will spend some time looking around the site – where you will find everything you need to know about why the event is needed, what is happening on the day, how to join in the fun, and much more. We look forward to receiving your support and seeing you there on the day! If you have any enquiries about the event, please email europeanunitywalk@epda.eu.com.

A short promotional film about the EPDA will be available to view on the EPDA's website and dedicated YouTube channel on 11 April – World Parkinson's Disease Day. The film, entitled The EPDA – 20 years improving the lives of people with Parkinson's, 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 heading. The film – especially made by established filmmakers and featuring the elements of the EPDA's recent brand refresh – will be of interest to all of the EPDA's key stakeholders, including its 45 member organisations (and those groups that work with them), EU policymakers and national MPs, the treatment industry, healthcare professionals, and people with Parkinson's and their carers. Click here to view the film.

Two of the EPDA's major assets – its website and flagship magazine – will enjoy significant branding refreshes in the spring and summer. The EPDA website is being totally transformed with the aim of becoming an indispensible Parkinson's resource for its key stakeholders. Whether you're from a national Parkinson's association or treatment company, a healthcare professional or an EU policymaker, you will be able to find useful information quickly and easily. The new site is expected to go live in the summer. Meanwhile, the EPDA's flagship magazine, EPDA Plus, will be available in its fresh, new look in May. Don't miss the new issue, which features a special 12-page EPDA 20^th anniversary year supplement.

The European Commission is urging member states, organisations and individuals to get involved in its European Year for Active Ageing and Solidarity Between Generations (EY2012). Launched in Copenhagen, Denmark, in January, EY2012 will consist of a number of activities held both at national and European level across the continent. If you want to become part of the occasion, visit the Commission's website as well as the participating member states' respective national websites and work programmes, which have been specially created to support the initiative. The EPDA is actively involved, and is part of a coalition composed of more than 50 stakeholders that are committed to working together to promote the European Year's objectives. Led by not-for-profit organisation AGE Platform Europe, the coalition has already produced a leaflet and a manifesto (now available in several languages).

The European Commission has published a proposal to revise the existing Transparency Directive (Directive 89/105/EEC), which regulates the national pricing and reimbursement procedures of medicinal products. If the new proposal is accepted, new medicines would enter the market faster, providing huge benefits for patients. Currently, member states have a specific timeframe – 180 days – to take certain decisions concerning the pricing and reimbursement of medicines. However, studies have shown that they are actually taking up to 700 days for innovative medicines and up to 250 days for generic medicines. As a result, the new proposal includes suggested measures that would reduce the duration of national decisions to 120 days for innovative medicines and 30 days for generic medicines. Stronger enforcement measures have also been suggested. The discussion will now pass to the European Parliament – where a rapporteur will be appointed in the next weeks – and to the Council of the EU for the continuation of the ordinary legislative procedure.

An evidence-based "Freedom Guide" was launched in the European Parliament in February. The guide, led by the European Disability Forum (EDF) – an umbrella organisation that represents more than 80 million Europeans living with a disability – contains evidence from thousands of respondents, nearly two thirds of which (63 per cent) stated that they do not believe people with disabilities enjoy the same levels of freedom of movement as other European citizens. The EDF hopes the guide will be used as a lobbying tool for a legally binding European Accessibility Act and will promote the UN Convention on the Rights of Persons with Disabilities. For more information, click here.

Association France Parkinson – one of the French Parkinson's organisations and EPDA member – has inspired one of the national government's key priority actions for 2012: the establishment of a "plan national d'actions Parkinson 2011-2014" (a national plan of action 2011-2014 Parkinson). Nora Berra (pictured), the French secretary of state for health, announced the strategy in March and said the plan will include millions of euros in extra funding for inter-regional co-ordination centres and regional centres of reference. The extra money aims to mobilise and co-ordinate the care sector and improve the continuity of care between a patient's hospital and home. "The EPDA congratulates the Association France Parkinson for their excellent lobbying at a national level," said EPDA president Knut-Johan Onarheim. "This achievement should act as an inspiration to many of our other members."

Image source:
Wikipedia - author, Furound

Two UK-based organisations – the Neurological Alliance and Action for ME – have warned the UK government that estimates for the number of people living with long-term neurological conditions have been grossly underestimated as people with myalgic encephalomyelitis (ME) have not been included. Sir Peter Spencer KCB, chief executive of Action for ME, said there were currently 250,000 people affected by ME in the UK alone. In response, the government's Care Services Minister Paul Burstow said: "We know that care for people with neurological conditions is not good enough and we must do more. It is clear that too many people are not getting personalised support to suit their needs."

India's first clinical guidelines for physiotherapists dealing with Parkinson's and other ailments, such as low back pain and hemiplehia (brain stroke), will be published by 2014, the Indian Association of Physiotherapists (IAP) has revealed. "It is for the first time that clinical guidelines for Indians would be framed," said IAP president Umasankar Mohanty. "The objective is to create evidence-based practice guidelines for its members for better patient outcome." He added that, at present, Indian physiotherapists follow the guidelines set by the American Physical Therapy Association (APTA). "However, as Indian patients are different, guidelines framed by other countries do not apply fully to them."

The European Federation of Neurological Societies (EFNS) is encouraging people to attend its 16^th congress, which is being held in Stockholm, Sweden, from 8-11 September. "The EFNS represents excellence in European neurology and combined patient care, research, education and partnership," said an EFNS spokesperson, "and this gathering of leading neurologists from around the world will facilitate a lively, fruitful discussion on all aspects of neurological research and practice." The congress is a Continuing Medical Education-accredited forum that features a top-class scientific programme. This year's itinerary includes teaching courses, satellite symposia, poster sessions, special sessions and focused workshops. It's estimated that 5,000 leading specialists from around the world will attend the event. To learn more about EFNS 2012 and to register, click here.

Parkinson Italia – a confederation of 24 independent Italian Parkinson's associations as well as an EPDA member – has, after many years of planning, finally launched its own dedicated website. The website features a wealth of information about Parkinson's as well as details about the organisation's activities, events, resources and more. Click here to take a look.

EPDA members can gain access to the latest volume of the European Neurological Review free of charge thanks to an exclusive partnership with the journal's publisher Touch Briefings. European Neurological Review is a peer-reviewed quarterly journal that includes review articles, case reports, practice guidelines and original research. In this edition – Volume 6 Issue 4 – articles include investigations into the new diagnostic criteria for the behavioural variant of frontotemporal dementia and the role of fluoxetine and selective serotonin re-uptake inhibitors in motor recovery following acute ischaemic stroke... and much more. To access the journal, click here.

A number of short videos about Parkinson's have made it to the shortlist of this year's Neuro Film Festival. Dancing Feet Help Defeat Parkinson's, I have Parkinson's – It Doesn't Have Me and Everything Moves are just some of the 105 entries at this year's festival, which is hosted by the American Academy of Neurology. "Every year the contest grows and continues to attract stellar videos promoting brain research," said a spokesman. "Watch inspiring stories of recovery and perseverance in the face of conditions such as epilepsy, Parkinson's, Alzheimer's, autism, MS, traumatic brain injuries and many others." Each film is less than five minutes in length and the other Parkinson's-related films can be found here. The winners will be announced in April.

Medical devices company Medtronic is recruiting runners from around the world who benefit from medical technology to participate in its seventh annual Medtronic Global Heroes programme. Up to 25 runners will be selected to receive two paid entries into the Medtronic Twin Cities Marathon Weekend in Minneapolis in October. The event is a co-operative effort between the US-based not-for-profit organisation Twin Cities in Motion and the Medtronic Foundation. The successful 'global heroes' will receive a travel package that covers airfare, lodging and meal expenses. Applications will be accepted until 27 April. Click here for more information or to nominate a runner. Help with translation is available via the website.

The US-based Society for Brain Mapping & Therapeutics (SBMT) has announced the 2012 recipients of its prestigious Pioneers in Medicine, Technology and Healthcare Policy Awards. This year, the society has selected Andres Lozano from the University of Toronto, Antonio Desalles from UCLA (the University of California, Los Angeles), and George Paxinos from the University of New South Wales to each receive a Pioneer in Medicine Award. The trio is at the forefront of neuromodulation and stereotactic radiosurgery research, and their "groundbreaking contributions have led to the development of state-of-the-art technology," according to the SBMT. "They have contributed to the understanding of the human brain and enabled scientists and surgeons across the globe to better treat neurological disorders such as Parkinson's."

New research suggests the administration of dopamine can uncover latent creative talents among some people with Parkinson's (PwPs). European scientists have discovered PwPs can suddenly become creative when they take dopamine therapy – producing pictures, sculptures, novels and poetry. In the study, Italian researchers studied 36 PwPs – 18 with increased artistic production and 18 without – and compared them with 36 healthy controls without Parkinson's. None of the patients had engaged in artistic hobbies before they took dopamine. "Our findings suggest that the patients' newly acquired artistic skills were probably there all along, but did not start to emerge until they took the dopamine therapy," said the researchers. Click here for more information.

Austria-based biotech AFFiRiS AG has enrolled the first patients in an early-stage clinical trial of a first-of-its-kind vaccine approach to treating Parkinson's. Last summer, The Michael J Fox Foundation (MJFF) for Parkinson's Research awarded $1.5 million to AFFiRiS for their vaccine – called PD01 – which targets alpha-synuclein, a protein implicated in Parkinson's whose clumping is the pathological hallmark of the disease. The Phase I study is testing the safety and efficacy of PD01. The hope is that this agent will simulate the production of antibodies that bind to alpha-synuclein, clearing it from the brain and slowing disease progression. The trial will engage 24 subjects with mild Parkinson's over two years at a single clinical site in Austria.

The success of an Australian two-year pilot study looking at the role of a community-based Parkinson's nurse has prompted a call for the government to establish a national network of the specialist nursing positions. A key investigator in the study – Associate Professor Simon Lewis (pictured), director of the Parkinson's Disease Research Clinic at the University of Sydney's Brain and Mind Research Institute – said the study, based on a nursing model that has been successful in the UK for 20 years, reported significantly increased health and quality of life measures for both the people with Parkinson's disease and their carers. There was an increasing demand for better access to information and support, he said, and Parkinson's nurses were integral to that.

People with symptoms suggesting rapid eye movement sleep behaviour disorder (RBD) have twice the risk of developing mild cognitive impairment (MCI) or Parkinson's within four years of diagnosis compared with people without the disorder, a US-based Mayo Clinic study has found. One of the hallmarks of rapid eye movement (REM) sleep is a state of paralysis. In contrast, people with RBD appear to act out their dreams when they are in REM sleep. Researchers used the Mayo Sleep Questionnaire to diagnose probable RBD in people who were otherwise neurologically normal. Approximately 34 per cent of people diagnosed with probable RBD developed MCI or Parkinson's within four years of entering the study – a rate 2.2 times greater than those with normal REM sleep. The researchers published their findings recently in the Annals of Neurology.

Taking statins may lower the risk of developing Parkinson's, particularly among people younger than 60, a new study suggests. The US study revealed that people who took cholesterol-lowering statins had a 26 per cent decreased risk of developing Parkinson's over a 12-year period. For those less than 60, the risk was reduced by 69 per cent. Researchers from Boston's Brigham and Women's Hospital and Harvard School of Public Health carried out the study, where they followed 38,000 men and 91,000 women from 1994 to 2006. The study is published in the March issue of the journal Archives of Neurology. Click here for more information.

With one drop of blood, researchers from the University of Medicine and Dentistry of New Jersey have found a way to tell if Alzheimer's affects the brain before any symptoms materialise. The research group is now applying the same methods to Parkinson's and, they argue, this technique could lead to diagnostic tests for multiple sclerosis too. "We're hopeful this type of system will work for many diseases," said Dr Robert Nagele who is leading the group. The group's Alzheimer's diagnostic test research was published in the PLoS One medical journal last year, while the Parkinson's research debuted in the same publication in February.