www.epda.eu.com
DECEMBER 2010

EPDAUPDATE

WELCOME

e-newsletter AUGUST 2011

Welcome to the September EPDA Update. As another summer drifts by and autumn approaches, it is a good time to reflect on what has been achieved for people with Parkinson's in that time. We at the EPDA hope that giving you bite-sized news items will inspire you to look at many of the interesting developments that are continually going on all around the world – developments that you may not usually have time to find for yourself. We also hope you notice and approve of the new 'policy news' section of the Update. As you'll see, the EPDA isn't the only patient organisation trying to raise the profile of neurodegenerative disorders – great work is being done on behalf of patients by a large number of voluntary groups, politicians, healthcare associations and more. We hope you enjoy reading the e-newsletter and, more importantly, we hope it inspires you to learn a little more about exciting new initiatives too.

 

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EPDA NEWS
     
Move for Change campaign HOT OFF THE PRESS

The results of the first phase of the EPDA's Move for Change campaign have now been analysed, and a report, based on the findings, has been accepted for publication by the European Journal of Neurology and will appear in its October issue. This Move for Change data has already played a large role in supporting the EPDA's European Parkinson's Standards of Care Consensus Statement, due to be published in October and presented to MEPs in Brussels in November. The three-year, pan-European online campaign questions whether the rights of people with Parkinson's (PWPs) have improved since the creation of the Charter for PWPs in 1997.

 
IT'S TIME TO CHANGE
The second phase of the EPDA's online Move for Change campaign is still live, and member organisations are encouraged to promote the opportunity of adding to this important data collection source to their respective members before the 28 October closing date. This year's topic focuses on how many European people with Parkinson's (PWPs) have access to support services, and so far 890 people have responded. Please urge your members to complete the survey (the target is 2,200) so PWP awareness can be raised among policymakers, healthcare providers and the wider healthcare community. Join the campaign at www.epda.eu.com/m4c-survey.
Member Pages Life with Parkinson's campaign EPDA General Assembly
IT'S MEMBER
TIME ONLINE		 GET A LIFE (WITH
PARKINSON'S)		 EPDA GA
REMINDER
The EPDA has launched a free service for its members to enable them to benefit from the web content managed system (CMS) that powers the EPDA websites. Introduced as "member pages", the service's aim is to provide EPDA member organisations that may not have their own websites with the CMS resources to enable them to do so. In addition, for EPDA members that already have websites of their own, the new service may be used to further promote and signpost EPDA visitors to their own sites and take advantage of the EPDA's European and international audience. EPDA members that wish to begin creating their member pages should contact Jennifer@epda.eu.com. The second part of the EPDA's Life with Parkinson's campaign – which focuses on non-motor symptoms – is now available in Danish, German, Italian and Spanish. All the translated materials are available on the Parkinson's Awareness website.

The EPDA's Learning In Partnership workshop and General Assembly (GA) is fast approaching and will be held from Friday 7 to Sunday 9 October at Runnymede-on-Thames, Windsor Road, Egham, Surrey, UK, TW20 0AG. It's also election year – when EPDA Board members are elected by the GA for a two-year term. The Board has received the following nominations for a further term of office, which are fully supported in writing by their national association Boards:
• Knut-Johan Onarheim
  Norway, President
• Susanna Lindvall, Sweden
  Vice-President
• Mariella Graziano
   Luxembourg, Treasurer
• Ami Ariel, Israel, Member
• Ann Keilthy, Ireland
   Young Onset Representative

POLICY NEWS
 
EPDA at the European Parliament Branko Šmid EDF meets EU President
EPDA JOINS
THE DEBATE		 EPDA WORKS
WITH EPF		 EDF RAISES ITS
PROFILE IN EC
The EPDA is to formally meet with MEPs in the European Parliament for the first time to discuss raising the profile of Parkinson's within the European political arena. The lunchtime event, entitled 'Chronic diseases in an ageing population – a spotlight on Parkinson's disease', is scheduled for 22 November and will also see the launch of the EPDA's European Parkinson's Standards of Care Consensus Statement to MEPs. Alongside the consensus statement – which categorically defines what the optimal management of Parkinson's should be – the EPDA will also present the supporting data from the first part of its online Move for Change campaign, which will be published in the European Journal of Neurology in October. See www.epda.eu.com/political-affairs-and-policy for more information.

EPDA Board member Branko Šmid and EPDA policy officer Heather Clarke participated in two European Patients Forum workshops in Warsaw, Poland, in July. 'The rights and needs of older patients' explored EU health-related policies, including the health and social policy priorities of the Polish EU Presidency and the aims of the European Innovation Partnership on Active and Healthy Ageing from the perspective of older patients with chronic diseases. 'Psychological aspects of ageing with chronic diseases', meanwhile, discussed specific psycho-social issues faced by patients with chronic diseases as they get older, but also the valuable contribution that older patients can make in support of younger patients. "It was an excellent event and the EPDA was honoured to represent European people with Parkinson's and hopefully raise their profile," said Šmid (pictured). "We look forward to attending similar events in the future."

A European Disability Forum (EDF) delegation led by its president, Yannis Vardakastanis, successfully discussed the next steps for people with disabilities in the EU with the president of the European Commission (EC), José Manuel Barroso. The meeting, held in Brussels in June, saw Barroso endorse the 'State of the Union' on disability – a proposed two-yearly meeting between the president of the EC, the president of the European Parliament and the disability movement – and he committed to ensuring the enforcement of the UN Convention on the Rights of Persons with Disabilities (which was adopted in 2006) throughout the EC.

MRI MRI RULING WELCOME
After a four-year campaign by radiologists, scientists, patients' groups and MEPs, it appears certain that magnetic resonance imaging (MRI) used for medical diagnosis and treatment will be exempt from new Europe-wide rules designed to protect workers from electromagnetic fields. "The European Commission has endorsed the position of patient organisations – including the EPDA – and has sought to ensure that the future of clinical and research use of MRI is not curtailed so that patients across Europe can benefit from this technology," said the EPDA's president, Knut-Johan Onarheim. "The European Parliament will start work on this again in September together with the Polish Presidency. Everybody expects this will be a victory for common sense and the EPDA welcomes the ruling." MRI is used prior to diagnosis when Parkinson's is suspected and it is helpful in ruling out conditions that have similar symptoms to the disease. In the near future it is possible that MRI imaging holds the potential for use in the diagnosis of Parkinson's and other neurodegenerative disorders.
Horizon 2020 EFPIA EY2012
WHAT'S ON THE
EU HORIZON?		 PROACTIVE HTA
REPORT		 EY2012 NOW
OFFICIAL
The next EU funding programme for research and innovation will be called "Horizon 2020 – the Framework Programme for Research and Innovation". The programme will enter into force on 1 January 2014, after the current Seventh Framework Programme (FP7) expires on 31 December 2013. "The different types of funding will be brought together in a coherent and flexible manner," said Máire Geoghegan-Quinn, European Commissioner for Research and Innovation. "Research and innovation funding will focus clearly on addressing global challenges. Needless red tape will be cut out and access to programmes and participation will be made easier and simpler." More details can be found here. A new report on Health Technology Assessment (HTA) processes has highlighted significant areas for improvement in order to accelerate patient access to new technologies and innovative medicines, and to make the most of tight public budgets. The study, jointly commissioned by the European Federation of Pharmaceutical Industries and Associations (EFPIA), the European Association for Bioindustries (EuropaBio), Medicines Australia and the Pharmaceutical Research and Manufacturers of America (PhRMA), compares the HTA processes and outputs against best practice principles. In particular, the report showed that the link between assessments and access decisions could be improved. See www.efpia.org for more information. The European Year 2012 of Active Ageing and Solidarity between Generations (EY2012) has successfully gone through the different stages of the EU legislation process and has been formerly adopted by the three EU decision-making institutions (the European Commission, the Council and the European Parliament). The EY2012 should encourage and support the efforts of member states, their regional and local authorities, social partners and civil society to promote active ageing and solidarity between generations and mobilise the potential of the baby boom generations. The 'European Year' will actually span from 2011 to 2014, during which the EU will put in place a framework in which new initiatives and partnerships supporting active ageing at all levels can be encouraged and publicised.
European Medicines Agency (EMA) EMA BACKS NEW LAW

The European Medicines Agency (EMA) has welcomed the new directive on falsified medicines. The new law aims to prevent falsified medicines entering the legal supply chain and reaching patients by introducing harmonised safety and strengthened control measures across Europe. The EMA is working closely with the European Commission and its national and international partners on the implementation of this legislation over the next 18 months. The directive came into force on 21 July and EU member states will have to start applying its measures from January 2013. Click here for more information.

 
EMA LISTENS AND LEARNS
The European Medicines Agency (EMA) has hosted a workshop on the changes to the safety monitoring of medicines in Europe following the new pharmacovigilance legislation that was adopted in the EU in December 2010 and aims to save lives by strengthening the European-wide system for monitoring the safety of medicines. At the 'second stakeholder forum', which took place in June, the EMA heard expectations from patients, consumer groups, healthcare professionals and the pharmaceutical industry. The outcome of the day's discussions will be used to guide the implementation of the legislation, which is scheduled to come into force in July 2012. The Agency is planning to hold further meetings on the implementation of the new legislation during the rest of 2011 and 2012.
EP LOOKS TO SOCIAL MEDIA European Parliament on facebook

The European Parliament launched two new online tools in July – the first mobile version of its website and a new Facebook page. The mobile 'app' will be accessible to smartphone users, while the Facebook page has been redesigned to allow rapid access to MEPs' profiles as well as to other online platforms such as Twitter, blogs and external sites. The developments raise the possibility of MEPs becoming more accessible to European citizens – and therefore patients. Click the links to learn more.

http://m.europarl.europa.eu/
www.facebook.com/europeanparliament

RESEARCH NEWS
 
Joint Programme in Neurodegenerative Disease Research mutation associated with an inherited form of late onset Parkinson's Nicotine
JPND'S CALL
TO ARMS		 GENE LINK TO
LATE ONSET		 NICOTINE
DILEMMA
A JPND (Joint Programme in Neurodegenerative Disease Research) joint transnational call between 20 countries was launched in June to encourage new approaches to the development of optimally informative biomarkers and the harmonisation of their use. The aim of the call was to establish multinational, collaborative research projects that will add value to existing research through addressing novel approaches to improve and harmonise the use of biomarkers in the area of neurodegenerative disorders. The total fund for this initiative is more than €14 million. Applications closed in September and ongoing details of the initiative will be found on the JPND website. A team of scientists from Germany and Austria have identified a mutation associated with an inherited form of late onset Parkinson's. The mutation occurs in a gene that plays a role in intracellular protein sorting. The study – the results of which have been published in the current issue of the American Journal of Human Genetics – was based on the genetic examination of an Austrian family with many affected family members. Using a new sequencing method – named exome sequencing – a mutation in the VPS35 gene was identified in all family members diagnosed with the disease. Click here for more information. The effect of nicotine on the brain could lessen the risk of Parkinson's, according to a new study. The report, published in the FASEB Journal, found that nicotine was able to rescue dopamine neurons from normal mice, but not those lacking a nicotine receptor. These findings could lead to the development of novel therapies for people with Parkinson's (PWPs) that focus on targeting the nicotine receptors. The study's authors believe this process could potentially treat PWPs at an early stage of the disease where the condition has not yet been diagnosed due to motor criteria. However, the journal's editor, Gerald Weissmann, said: "Smoking greatly increases the risk for deadly cancers and cardiovascular diseases. We should be able find non-toxic ways to hit the same target."
Stem cells NEW STEM CELL ERA?

Scientists at the Universities of Glasgow and Southampton have uncovered a new method for culturing adult stem cells that could lead to the creation of revolutionary stem cell therapies for conditions such as Parkinson's, Alzheimer's and arthritis. The research was published in the journal Nature Materials and shows how a new nanoscale plastic can cheaply and easily solve a problem that has previously made the expansion of stem cells for therapeutic purposes impossible. Created by an injection-moulding process similar to that which is used to manufacture Blu-ray discs, the surface is covered with 120-nanometre pits which the researchers have found is much more effective in allowing stem cells to grow and spread while retaining their stem cell characteristics.

 
STEM CELL HOPE
Parkinson's and Alzheimer's could be treated in the future with pluripotent stem cells (iPSCs) from the skin. Such is the view of Paul S Knoepfler from the University of California Davis, who acknowledged there had been obstacles in the five years since the first paper describing the process was published. Despite this, he wrote recently that scientists would potentially be able to solve these initial issues, meaning that the technique could one day be used to treat neurodegenerative conditions. "Problems that have been identified with their use can be overcome, allowing iPSCs to jump from the laboratory dish to patients who could benefit from them," he said.
Motion capture Michael J Fox Foundation Increased risk of Parkinson's disease
A HIGH-TECH
PLAN		 FOCUS ON
FASUDIL		 STIMULANTS
RISK
Using the same technology as animated movies, researchers at Florida Gulf Coast University are testing a unique treatment for Parkinson's. When 67-year-old Fernando Martinez, who has lived with Parkinson's for 11 years, walked through the school's bioengineering lab, sensors and cameras detected his every move as a computer plotted that data in 3D. Then, a physical therapist manipulated his spine to loosen it up and performed the motion analysis again. "A lot of people with Parkinson's actually don't move their spine well at all," said Arie van Dujin, a physical therapy assistant professor. "So we're trying to answer the question: if we mobilise the spine, do they walk better?" The results of the study is hoped to be published by the end of the year. The Michael J Fox Foundation has awarded a $400,000 grant to fund US research into a drug that has the potential to halt the progression of Parkinson's. The focus of their efforts is Fasudil, a drug already approved in Japan to improve blood flow to the brain in stroke victims that has also shown similar positive outcomes in the US in late-stage clinical trials. Because other drugs only provide relief from symptoms, researchers from Michigan State University, the Van Andel Research Institute and the Translational Genomics Research Institute are excited about Fasudil's potential in protecting and restoring degenerating neurons affected by Parkinson's. If the drug is effective, it could be made available to patients relatively quickly, said one of the researchers. Patients who abuse methamphetamine and other related stimulants may be increasing their chances of developing Parkinson's, researchers have found. Those hospitalised in California for methamphetamine or other amphetamine-related conditions had a significantly greater risk of developing the neurological condition than those admitted for appendicitis or cocaine use, Russell Callaghan, MD, of the University of Toronto, and colleagues reported online in Drug and Alcohol Dependence. The findings "support the long-hypothesised notion, based on animal data, that methamphetamine exposure might lead to enduring damage of brain dopamine neurons in humans," the researchers wrote.
Guo teng DON'T CURB THE HERB
A Chinese herb is proving effective in treating the symptoms of Parkinson's and reducing the disease's side effects caused by levodopa, it has been claimed. A new study by researchers at Hong Kong Baptist University showed that guo teng, a traditional Chinese medicine, is effective in improving communication in people with Parkinson and alleviating other symptoms, including depression, sleeping difficulties, constipation and loss of appetite. The herb is also called uncaria rhynchophylla. "There is no cure for Parkinson's right now, but the study showed Chinese medicine can help treat the disease," said the researchers.
AUSSIE RULES Shake It Up Foundation
An Australian businessman has partnered with the Michael J Fox Foundation (MJFF) to raise money for Australian researchers to find a cure for Parkinson's. Diagnosed with Parkinson's two years ago at the age of 44, Clyde Campbell decided to take action by creating the Shake It Up Foundation. He then met Fox and the MJFF board, winning approval to establish Team Fox Australia as its official fundraising arm. The foundation has so far secured $1m in funding for its first year of programmes and a $2m commitment in dollar-for-dollar contributions for the first three years.

GENERAL NEWS
 
MDPD 2012 Parkinson's Movement Michael Carruth
IT'S CONGRESS
TIME AGAIN		 PARKINSON'S ON
THE MOVE		 FAMILY
TIES
Join fellow neurologists, geriatricians, psychiatrists, psychologists and other specialists at the 8th International MDPD Parkinson's Congress, from 3-6 May 2012, in Berlin, Germany. During the advanced scientific programme, which will cover key topics across the field, leading international speakers will provide insights into the latest developments and strategies in the understanding of cognitive and psychiatric aspects of Parkinson's and related disorders. Abstracts should be submitted by 28 November. Go to www.kenes.com/mdpd for more information and to register. A new online concept has grown within the Parkinson's community, based around the most important resource available – people with Parkinson's (PWPs) themselves. Parkinson's Movement (www.parkinsonsmovement.com) is a website that provides engaging content, thought-provoking analysis and accurate information to the Parkinson's community. It also canvasses opinion and stimulates discussion with PWPs, and the founders plan to communicate the responses to policymakers around the world. "Nobody understands Parkinson's better than us, the patients," said co-founder Tom Isaacs. "We [at Parkinson's Movement] believe that PWPs should take a bigger role in their present and future treatment. And we plan to do this through knowledge, information and the sharing of collective experience." One of the Parkinson's Association of Ireland's (PAI) ongoing awareness-raising initiatives was boosted at an event in April thanks to the presence of former Irish Olympic boxing gold medalist Michael Carruth (pictured), whose father, Austin – one of the nation's best-regarded boxing trainers – had Parkinson's and died in February. Michael, who won his medal 19 years ago, spoke at the event and said he was going to fully support PAI. True to his word, he has since helped organise the Austin Carruth Memorial Pitch & Putt Golf Classic in August. Visit www.parkinsons.ie for more information.
Games For Health FUN AND GAMES
The US-based Games For Health Foundation is organising its first European convention to help raise awareness about how games and simulations are able to provide a contribution to improved healthcare and keep it affordable. Games for Health Europe 2011 will be held in Amsterdam, the Netherlands, on 24 and 25 October, where a number of presentations, workshops and demonstrations will provide an insight into the latest developments in game applications that currently help care for the elderly, addicts and psychiatric care patients. "In the near future, you will go to your doctor and you will be prescribed a game, which alleviates symptoms," said organiser Jurriaan van Rijswijk. You can register at www.gamesforhealtheurope.org.
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