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"Many congratulations on the most recent EPDA Plus 17 which I thought was stacked with interesting, topical and engaging articles"

Tom Isaacs
The Cure Parkinson's Trust

EPDA Plus Issue 17 - Autumn 2011
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EPDA Plus Issue 17

Autumn 2011 | English

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ISSUE 17 CONTENTS

  • EPDA planning historic event

    The EPDA will, for the first time,formally meet with MEPs in the European Parliament to discuss raising the profile of Parkinson’s within the European political arena

  • PWPs get on their bikes for PD

    A six-man team of cyclists – most of whom live with Parkinson’s – has completed a 2,000-mile cycle across the UK and Ireland to raise funds for Parkinson’s UK

  • The grim side effects of drugs

    UK television broadcaster Channel Four has screened a 30-minute documentary about a woman with Parkinson’s who claims her medication has left her craving sex, shopping and social networking

  • An illuminating initiative

    How a unique partnership is using art to help raise the awareness of Parkinson’s

  • Dance film set to move with the times

    A short film that focuses on the power of dance for people with Parkinson’s (PWPs) has inspired an online campaign of the same name

  • New toolkit for patient groups
    The International Alliance of Patients’ Organisations (IAPO) has, in association with Novo Nordisk, launched a toolkit to support patient organisations in developing effective relationships with key stakeholders

  • DVD to ‘delay Parkinson’s’

    For people with Parkinson’s (PWPs), being able to perform seemingly simple daily activities can be daunting. In a bid to ease this issue, functional fitness trainer David Zid and registered nurse Jackie Russell, both from the US, have launched an exercise DVD – Delay The Disease: Functional Fitness for Parkinson’s – to address “situational movement challenges” one at a time and demonstrate specific exercise sequences for overcoming them

  • PWPs head to Africa to conquer a mountain – and their disease

    There must be something in the air – the mountain air that is, as this autumn will see two different Parkinson’s inspired excusions to Mount Kilimanjaro

  • Parkinson’s UK starts nurses campaign to combat cuts

    Parkinson’s UK has launched its Protect Parkinson’s Nurses campaign to protect frontline Parkinson’s disease nurse specialists (PDNSs) from the risk of NHS cuts

  • Stress and PD link revealed

    An article in the latest edition of the Scientific American Mind journal has reported new research that suggests stress may play a part in whether a person develops a neurodegenerative disease such as Parkinson’s or Alzheimer’s

  • Scientists find new PD gene

    Researchers led by the Medical University of Vienna in Austria have identified a new gene called VPS35 that they say impacts Parkinson’s. The findings, published in the American Journal of Human Genetics, show that this gene is mutated in people with Parkinson’s; it is the sixth one to be linked to the neurological disorder and the third dominant gene

  • DBS studies provide insights into the procedure’s durability

    Subthalamic nucleus deep brain stimulation (DBS) does not appear to change the course of Parkinson’s when it is performed on people who have had the disease for a number of years

  • NPF launches unique PD app

    The US-based National Parkinson Foundation (NPF) has launched the country’s first free smartphone application to improve the diagnosis and treatment of Parkinson’s. The Parkinson’s Toolkit is a mobile enhanced website with a companion smartphone app available for download at www.toolkit.parkinson.org

  • Prescription concern for PWPs

    Nearly every prescription written to treat Parkinson’s psychosis – a common psychiatric side effect of Parkinson’s – provides medications that have not been shown to improve the condition, a new study has shown. The research also found that about three of every 10 prescriptions are for drugs that can actually harm patients

  • Scientists excited about ‘weird’ mature skin cell breakthrough

    Skin cells from a 30-year-old woman have been turned directly into mature nerve cells similar to those found in the brain using a procedure that has the potential to revolutionise the emerging field of regenerative medicine, it has been claimed in the journal Nature

  • Merck trials progressing
    Treatment company Merck Serono has announced that it has completed patient enrollment for two of its ongoing studies – SETTLE and MOTION
  • Neuro blood test possibility
    A new blood test that is apparently more than 90% accurate at identifying Alzheimer’s – and can perhaps detect it even before symptoms appear – has been developed by scientists
  • United we stand
    Continuing our series of special features on how Parkinson’s is managed around the world, EPDA Plus crossed the Atlantic to the US and discovered a group of national organisations that listened to each other and learned from each other – all in the name of Parkinson’s. Meet some of the key players
  • Parkinson’s Action Network (PAN)
    Organisation at a glance: It is the unified voice of the Parkinson’s community in the US, advocating at a political level for better treatments and a cure
  • The Michael J Fox Foundation (MJFF)
    Organisation at a glance: It is dedicated to finding a cure for Parkinson’s through an aggressively funded research agenda and to ensuring the development of improved therapies for those living with Parkinson’s today
  • The Parkinson Alliance (PA)
    Organisation at a glance: It is a national non-profit organisation dedicated to raising funds to help finance the most promising research to find the cause and cure for Parkinson’s
  • EPDA set to undertake ‘exciting refresh’
    The EPDA is embarking on a “significant visual branding exercise” as the organisation continues to work towards its objectives of providing a strong, unified voice within Europe that will help push the profile of Parkinson’s further up the European political agenda
  • Hungarian PWPs get involved
    The Delta Hungarian Parkinson’s Association together with the Hungarian Scientific Parkinson Association celebrated World Parkinson’s Day in April by mixing buisiness with pleasure in the beautiful surroundings of Ramada Resort Aquaworld in Budapest. More than 120 delegates attended, including people with Parkinson’s (PWPs), neurologists, Parkinson’s specialists and other healthcare professionals
  • Destination Europe
    One of the EPDA’s major missions is to develop a two-way dialogue between Parkinson’s patient associations and the most influential policymakers in the European Parliament. It’s not an easy task and will require serious planning and determination. But it is possible, as Lizzie Graham explains
  • Move for Change survey shortlisted for top award
    The EPDA’s online campaign is in with a chance to win the European Health Forum Gastein’s European Health Award
  • What a perfect opportunity
    As you read through this special edition of EPDA Plus you will recognise a dedicated movement throughout the global community that is aimed at improving the quality of research as well as the lives of people with Parkinson’s and their families. Throughout many of our featured articles the focus is no longer simply about finding a cure – as it has been traditionally – but instead about improving the lives of people with Parkinson’s (PWPs) and their families and resolving the many challenges they face on a daily basis.
  • What a day!
    World Parkinson’s Day – 11 April – is an annual highlight for all European Parkinson’s organisations’ calendars. Always an occasion to remember – wherever it is celebrated – here is a selection that deserve a special mention for their efforts and achievements...
  • Home truths
    Unhappy UK neurologist Leslie Findley is concerned that people with Parkinson’s across Europe are losing out as some medical doctors and politicians may not be acting in their best interests. But instead of reinventing the wheel, he says, we should look to past research and apply it in the modern era. In fact, this should have been done more than 20 years ago
  • The power of partnership
    Developing long-term relationships with patient organisations can only enhance the treatment industry’s commercial interests and understanding of chronic diseases – a situation that would benefit people living with the conditions, argue Beverly Barr and Knut-Johan Onarheim
  • Bridge building
    Merck Serono held its ‘Making the Connections in Neurodegenerative Diseases’ discovery event in February – a unique forum that connected its own researchers with key medical experts, people living with the diseases and advocacy groups. Here are the main highlights
  • Multiple issues
    It has been claimed that Parkinson’s, due to its diverse nature, represents not one disease but several, making it a very difficult condition for clinicians to treat. As a result, various official recommendations have been made over the years to help simplify the treatment options. Dr Michael Schüpbach reviews the latest developments
  • Finding the perfect balance
    Levodopa therapies have proven efficacy in Parkinson’s and are eventually prescribed to most people with the condition. Over time, however, the effect of levodopa seems to fade and symptoms can re-emerge just before the next dose is due. Professor Heinz Reichmann gives EPDA Plus his views on how to deal positively with wearing off – the ‘fading effect’


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From issue 13, EPDA Plus has been translated into French, German, Italian and Spanish.  These multilingual versions are only available to download.