EPDA UPDATE ::: JUNE 2012

Email not displaying correctly?
Click here to view in your browser and for print friendly version.

THE VOICE FOR PARKINSON'S IN EUROPE EPDAUPDATE
JUNE 2012 ● www.epda.eu.com
WELCOME
It appears that the summer has finally arrived for most of us in Europe and that certainly is a cause of celebration. But there are other reasons to get excited at the moment – and they include the many excellent initiatives the EPDA is working on in 2012, its 20th anniversary year. As you'll read below, our stylish and streamlined new website is now live, the first ever European Unity Walk is fast approaching and our other awareness-raising initiatives are gathering powerful momentum too. But they all need more support from you – our partners and friends – in order to reach their full potential. We hugely appreciate all the support you regularly give us but we strongly urge you to read our news below, get involved in all of our events and campaigns and help us make a real difference to the lives of people with Parkinson's. As we say in our promotional film, which we hope you've seen: "Together, we can make this happen". Happy reading and enjoy the sun (while it lasts!).

EPDA NEWS

EPDA WEBSITE NOW LIVE!

The much-anticipated new-look EPDA website is now live and well! Following months of reassessing the old site's usability, the EPDA has launched its new streamlined site, which is focused on directing its many visitors to the right place quickly and efficiently. "Whether you're one of our member organisations, a person with Parkinson's, a European policymaker, a healthcare professional or a representative from the treatment industry or the media then you will be able to find the information that is relevant to you – all at the instant click of a mouse," said Chiu Man, EPDA's head of operations. Click here to explore the new site and don't forget to email info@epda.eu.com with your feedback.

UNITED WE STAND FOR PARKINSON'S

As we hope you're all aware, the EPDA's European Unity Walk website is now live. If you haven't visited the site yet, please ensure you do by clicking here. The first-ever European Unity Walk will take place in the heart of Amsterdam on Friday 28 September, and 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. Please register for the event here and we look forward to receiving your support and seeing you there on the day!

PLEASE SIGN OUR PLEDGE FOR PD!

The EPDA urges each and every one of you to sign its Pledge for Parkinson's – a four-point 'call to action' that outlines how MEPs and other policymakers can work towards improving conditions for people with Parkinson's. The Pledge was launched in the European Parliament on 11 April and was signed by nearly 50 MEPs – a great indication that European policymakers are becoming more aware of the need to place a greater political emphasis on Parkinson's. However, the Pledge is open to anyone and everyone to sign and your support is vital in ensuring its momentum continues to grow. Signing up to the Pledge takes a few seconds and can be done here.

HELP THE EPDA EFFECT CHANGE

The third and final part of the EPDA's Move for Change campaign is now live – and we request that people with Parkinson's (PwPs) and their carers spend the little time it takes to complete the survey. The online questionnaire determines whether PwPs receive continuous care and take part in managing their illness – two key rights agreed in the EPDA's 1997 Charter for People with Parkinson's. "The more responses we get, the greater weight the data will carry with European policymakers. Please encourage as many people as possible to help us effect change," said EPDA president Knut-Johan Onarheim. Click here for more information.

A BIGGER CONSENSUS

The EPDA's The European Parkinson's Disease Standards of Care Consensus Statement has been translated into Swedish – and is due to be translated into Dutch and Greek in the coming months. The document describes for the first time how people with Parkinson's should be managed and highlights the areas that need to be focused on in order to effect change. Since its launch in the European Parliament last November, the Consensus Statement continues to gain momentum having been read, supported and endorsed by a number of European policymakers. Click here to download and use the document. If you are able to help translate it into other European languages, please let us know by emailing info@epda.eu.com.

WATCH THE CONSENSUS!

The Consensus Statement is strongly advocated in the EPDA's new promotional film, which is available to view on the EPDA's website and dedicated YouTube channel. Linda McAvan MEP as well as leading neurologist Bastiaan Bloem and representatives from the treatment industry all discuss the document's importance. 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. Click here to view the film.

LIFE GOES ON IN NEW LANGUAGES

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, has recently been translated into Hebrew and Russian, while the second part of the campaign, which discusses non-motor symptoms, is now available in Bulgarian, Czech and Turkish. Click here for more information.

WRITE US A LETTER AND WIN A KINDLE!

The EPDA is once again giving away an Amazon Kindle e-book reader as it continues to encourage a greater sense of community with its EPDA Plus magazine readers. The 'Readers' letters page' in the last issue proved very popular and successful and, as a result, we still want to hear your views on any Parkinson's-related issue that really matters to you. Whether you're a person with Parkinson's, a healthcare professional, a politician or part of the treatment industry – your voice counts and we want to hear it and publish it. Each submission should be no more than 300 words long and should be emailed to editorial@epda.eu.com. Visit www.epda.eu.com/competition/ to find out more.

THE EPDA: READ ALL ABOUT IT!

A 12-page supplement detailing how the EPDA is celebrating its 20th anniversary year with a number of awareness-raising activities will soon be available as a standalone document. Originally included within the latest issue of EPDA Plus, the supplement features a series of articles including an interview with outgoing secretary general Lizzie Graham in which she discusses the EPDA's past, present and future. In addition, there is also a focus on the EPDA's 2012 initiatives (including its website relaunch, the inaugural European Unity Walk and its promotional film), a review of the Move for Change campaign and its political and policy developments. If you would like a copy of the supplement, please email info@epda.eu.com.

DATES FOR YOUR DIARIES

The EPDA is hosting a special conference to celebrate its 20th anniversary on Saturday 29 September in Amsterdam. The conference follows the inaugural European Unity Walk (28 September) and precedes its annual general assembly (30 September). Both the conference and general assembly will take place at the Grand Hotel Krasnapolsky. The conference will feature a series of presentations (in the morning) and workshops (in the afternoon) that revolve around the EPDA's The European Parkinson's Disease Standards of Care Consensus Statement in order to encourage national Parkinson's organisations to lobby policymakers to improve standards of care for people with Parkinson's in their countries. Registration details for the weekend will be available via the EPDA's new-look website in the coming weeks.

POLICY NEWS

DISABILITIES A PRIORITY

EU members states must prove they are removing barriers to people with disabilities in order to receive European money, according to new regulations on the EU Structural Funds. Delegates at a workshop hosted by the European Disability Forum (EDF) and Polish MEP Danuta Hübner (pictured) heard that the UN Convention on the Rights of Persons with Disabilities should be at the heart of the displacement of European funds. "The rights of the 80 million European citizens with disabilities must be recognised and the structural funds used to meet their needs," said Hübner. The message from the European Parliament was unequivocal: the future cohesion policy 2014-2020 will have to include persons with disabilities.

HERE'S SOME GOOD NEWS FROM THE EU

Organ donation and rare diseases initiatives were among the success stories presented at a high-level EU conference in May. Organised by the European Commission Directorate-General for Health and Consumers and its Executive Agency, the event showcased the presentation of the results of the Commission's two health programmes (the first ran from 2003-2008 and the second, which runs from 2008-2013, is almost finished). European Commissioner for Health and Consumer Policy John Dalli (pictured) said he was "keen to ensure that the European Union continues to invest in projects that can make a difference in improving citizens' health and wellness". The 2014-2020 health programme will enjoy an increased budget of nearly €450 million.

EU 'MUST INNOVATE'

EU member states should focus on healthcare innovation against the backdrop of a global economic crisis and the ageing society, according to the EPSCO Council. During an informal meeting in Denmark, the EU ministers for social affairs, employment and health agreed the need for more sustainable healthcare. They also discussed chronic diseases and patients' participation in the management of their disease. Danish Minister for Health Astrid Krag (pictured), said: "I am very glad to see a common understanding among my colleagues that patient empowerment is not a question of leaving patients alone... It is about getting the best-quality treatments for the resources we have."

HEALTH WIKI LAUNCHED

European health experts will now be able to write, edit and share up-to-date information online with the launch of the Health in Europe: Information and Data Interface, known as HEIDI. Although it has been set up by the European Commission's Directorate General for Health & Consumers, HEIDI will be run by its users, who will be able to access and compare current and historical data across member states and regions. Information on some topics will also be presented in a variety of graphs and charts for ease of comparison. For more information, click here.

HOPE FOR FRENCH FARMERS WITH PD

The French government has officially recognised Parkinson's as an occupational disease that has established links to the use of pesticides. This legislation will offer financial compensation to farmers who contracted the disease just a year after coming into contact with pesticides. In the past 10 years, just half of the 20 cases submitted to the committees for occupational diseases have been approved. The new regulations will ease the administrative burden for those diagnosed with the disease who are no longer able to work. A large number of people may be affected by this legislation: Parkinson's is the second most common neurodegenerative disease in the country, after Alzheimers.

GENERAL NEWS

HEALTH COVER MADE EASY

Keeping track of your documents while at work or on holiday is now easier with the launch of the European Health Insurance Card (EHIC) app for smartphones. Instead of carrying another piece of plastic in your wallet, you can now download your personal information onto your phone and receive medical treatment while you are away. The card entitles you to the same state-provided care as any other insured citizen and is valid in all 27 EU countries, Iceland, Lichtenstein, Norway and Switzerland. The EHIC is not an alternative to travel insurance, however, as other costs such as transportation home are not covered. Click here for more information.

PARKINSON'S UK ON THE HUNT

Parkinson's UK has launched the world's biggest in-depth research study into Parkinson's. More than 50 research centres across the UK will track 3,000 people for five years – either recently diagnosed people with Parkinson's, those aged under 50, or their siblings. The patient organisation hopes this study will bring it closer to creating diagnostic tests for Parkinson's, such as from markers in the blood, and eventually a cure. Parkinson's UK is investing £1.6 million in the "Tracking Parkinson's" study and Dr Kieran Breen (pictured), director of research and innovation, said: "Finding a cure for Parkinson's is like building a gigantic jigsaw, but we still have a number of the pieces missing. This vital new study will help us fill in some of the gaps in our knowledge."

TRIPLE DRUG LAUNCH

A generic version of the triple-drug combination of Levodopa, Carbidopa and Entacapone – known as Stalevo – has now been authorised for use. Pharmaceutical and biotechnology company Wockhardt created the generic form in four strengths – 50mg, 75mg, 125mg and 200mg – and the product is entitled to 180 days of exclusivity, after which competitors may launch alternatives. However, despite the $55 million market for the triple drug, the number of competitors is expected to be very limited. The Stavelo brand is owned by the Orion Corporation and marketed in the US by Novartis.

'INVISIBLE' CARERS NEED REST

UK not-for-profit organisation Vitalise has published new research that shows carers may not realise they are entitled to respite support. Many of the older carers surveyed had not received a care assessment and, as a result, were unaware that local authority funding for short breaks existed. Chris Simmonds, chief executive of Vitalise, said: "Clearly more needs to be done to reach out to this army of invisible carers across the UK, since without the escape valve of regular time off from caring, we know only too well that carers risk reaching breaking point and ending up sick, depressed, and facing the very real risk of becoming disabled themselves."

CALLING ALL BRAVE CARERS

Nominations are now open for an awards programme that will net 10 winning carers a $10,000 prize. Launched last year by biopharmaceuticals company Shire, the BRAVE awards honour the unpaid volunteers who provide regular care for those unable to care for themselves. Individuals in Australia, Belgium, Canada, France, Germany, Italy, Spain, Switzerland, the UK and the US are eligible to enter. There are no restrictions on the type of care provided and recipients do not have to be prescribed Shire medications or treatments. Nominations are open until 17 June. Click here for more information.

CARING APP LAUNCHED

Carers will be able to juggle paid work and caring responsibilities more efficiently thanks to a soon-to-be-launched digital planner 'app' for smartphones. Carers UK has been chosen to take part in the Sidekick School programme – a scheme led by UK social investment charity the Nominet Trust, which is offering four UK charities a share of £600,000 to develop a digital start-up idea. Sidekick School aims to help voluntary sector organisations build digital products or services that can generate revenue. Heléna Herklots (pictured), chief executive of Carers UK, said: "As we struggle to balance the many responsibilities in our everyday lives, we will need exactly the kind of innovative solutions that this partnership offers."

MJFF TOOL MORE THAN A WEBSITE

An online community for people with Parkinson's and their carers has been developed to help them interact and learn from others with the condition. Created by biopharmaceutical company UCB, the community – called More than Motion – will include a Facebook page, expert advice, quizzes and a reality-style video series. Jo-Ann Golec, who was diagnosed more than 15 years ago and features in the video series, said: "My family and I are telling my story in the More than Motion community to encourage others to educate themselves about all symptoms of Parkinson's, so they can best manage the condition." Click here for more information.

THE PERFECT MATCH

The Michael J Fox Foundation for Parkinson's Research (MJFF) has launched a new online tool to match volunteers with clinical trials. The Fox Trial Finder (www.foxtrialfinder.org) connects volunteers – with and without Parkinson's – to the trials most likely to need them. This anonymous website increases the efficiency of the enrollment process as well as empowering patients to become more involved in the discovery of new treatments. MJFF CEO Todd Sherer said: "The tool instantaneously sorts through scores of trials to find the ones that specifically need you. And once you save a profile, Fox Trial Finder will continually alert you to your best matches as new trials launch, without you having to come back to the site to search again."

US COURSE FOR PHYSIOS

The US-based Parkinson's Disease Foundation has launched an online course – Parkinson's Disease: A Practical Approach to Evaluation and Treatment for the Physical Therapist – in response to increasing demand from physiotherapists for Parkinson's information tailored to their discipline. Dr Terry Ellis (pictured), from Boston University, said: "As physical therapists, we can make a difference in the lives of people with Parkinson's. This course puts the latest evidence-based findings in the hands of practitioners around the country to help them provide the best care possible."

RESEARCH NEWS

LASER HOPE FOR PwPs

The US-based Mayo Clinic has developed a laser device that is helping some people with Parkinson's (PwPs) walk more easily. The Mobilaser is attached to a walker or cane and makes a line appear on the floor towards which the PwP can step. Self-generated movement, such as walking, is transmitted through an area of the brain that is slowed by Parkinson's. However, movements linked to visual cues, such as walking towards a line, take a different route, bypassing the trouble spot. Dr Brian Klaussen, a movement disorders neurologist at the Mayo Clinic, said: "[The Mobilaser] is a kind of a trick you're using to trick the brain into working better."

DRUG ERRORS ARE 'COMMON'

People with Parkinson's are often prescribed incorrect doses of Levodopa in hospital and may even be given medication that makes their condition worse, according to a new study from the Canada-based University of Calgary. Researchers studied 55 Parkinson's patients who were admitted to hospital and found that 80% were given the wrong medication. The prescription problems included failure to continue the patients' usual medications and, more seriously, the addition of dopamine-blocking agents that can aggravate the disease. Dr Kate Wiltshire (pictured), lead author of the study, said: "Widespread education of providers and safe-prescribing protocols are urgently needed to address these unsafe care issues."

NEW LEVODOPA GEL 'A SUCCESS'

A gel form of medication applied directly into the small intestine is more successful than standard oral medications in reducing "off" time in patients with advanced Parkinson's, according to a new study. Researchers at the University of Maryland found that implanting the gel into the small intestine reduced "off" time by nearly two hours a day. William Weiner (pictured), chair of the Department of Neurology at the US-based University of Maryland School of Medicine, said: "This is a new way to administer the most beneficial Parkinson's drug – levodopa – and it appears to be effective in this Phase III trial. This gel may prove to be an alternative for more advanced patients [who are] considering deep brain stimulation surgery."

NEW PEPTIDE TREATMENT

Researchers at Israel's Tel Aviv University have developed a new peptide treatment for Parkinson's that can be injected or absorbed through the skin. Nirit Lev, a movement disorders specialist at the University, claims the peptide:
- stops neurodegeneration and supports higher dopamine levels in the brain
- reduces problems with mobility in preclinical trials
- could be developed as a preventive strategy that "can mean the difference between living life as a Parkinson's patient or aging normally".
This peptide does not degrade quickly (unlike some) and offers a safe treatment option as peptides are organic to the body itself.

RATING SCALE PROGRESS

A new study has identified the best rating scale to test patient response to dyskinesia therapies. Researchers found that the Unified Dyskinesia Rating Scale (UDysRS) was superior to current methods of tracking treatment effect and will enable researchers to design more accurate clinical trials. Glenn Stebbins, professor of neurological sciences at the US-based Rush University Medical Center, said: "Dyskinesia can be a significant problem for people with Parkinson's and there is currently no therapy approved by the US Food and Drug Administration (FDA) to treat it. But there has been a big push over the past few years in both academia and the pharmacological industry to develop drugs to treat this side effect. We're hopeful that the UDysRS will be a useful tool to help translate research into treatments."

COLONOSCOPY POSSIBILITY

Parkinson's might one day be diagnosed from tissues in the colon, according to a new study. Researchers from the US-based Rush University Medical Center examined samples taken during colon exams of people who went on to develop Parkinson's. The cells in the patients' intestinal walls contained clumps of alpha-synuclein – a protein of Parkinson's – years before the patients developed disease symptoms. Doctors currently cannot diagnose Parkinson's until patients show motor signs such as shaking, slowed movements and stiff muscles. By then, however, the patients' brains have deteriorated significantly. The findings of this study suggest that colon screening at such an early stage could slow or stop progression of the disease.

PHASE I PARKINSON'S DRUG HOPE

A new treatment for Parkinson's and other central nervous system conditions may be a step closer with the successful outcome of the phase I trial of a new adenosine A2A antagonist drug by UK pharmaceutical company Vernalis. The double-blind, placebo-controlled study investigated single and multiple doses of the drug and was conducted in healthy male volunteers. Both the single dose and repeated administration for 14 days across a wide range of doses were well tolerated and had no unexpected safety findings. Ian Garland, CEO of Vernalis, said: "We are very pleased with the outcome of this study and will continue to pursue its development in Parkinson's and other CNS indications."

BOOST FOR EARLY AND LATE-STAGE PwPs

A new medication for patients in both early and advanced stages of Parkinson's has been found to increase "on" time safely and effectively, according to new research. Newron Pharmaceuticals announced the results of its phase III study of safinamide, an addition to dopamine agonist therapy for those in early stages of the disease, and to levodopa therapy for those in advanced stages. Ravi Anand, Newron's chief medical officer, said: "The positive results from these global trials provide substantial evidence for the efficacy of safinamide as an add-on treatment to the most commonly prescribed drugs in Parkinson's patients."

Michael J Fox Foundation for Parkinson's Research

Sanofi

MJFF AND SANOFI TRIAL

The Michael J Fox Foundation for Parkinson's Research and pharmaceutical company Sanofi have teamed up to trial a new drug that could improve cognitive function in people with Parkinson's (PwPs). While a drug exists for PwPs with dementia, there is nothing available for those with less severe cognitive dysfunction – such as difficulties planning or sustaining behaviours towards a goal. Studies show that up to 80% of PwPs may experience such difficulties. The new drug is called AVE 8112 and is a phosphodiesterase type 4 inhibitor. Patient enrolment and the clinical trials will take place in the US later this year.

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.

EPDAUPDATE

WELCOME