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EPDA Plus 24
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EPDA Plus issue 24

Winter 2014 | English

 





 

 

 

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ISSUE 24 CONTENTS

  • EPDA forms Parkinson’s SHI alliance
    The EPDA is embarking on a groundbreaking Parkinson’s strategic health initiative (SHI) that will unite many of the major stakeholders involved in the management of the disease.
  • Letters 
  • Welcome
    Something tells me 2014 is going to be a very positive year for the European Parkinson’s community.
  • News
    • Pesticide - Parkinson's link hits the courts
      A Qantas air steward who believes he developed Parkinson’s after repeated exposure to pesticide spray is suing his former employer.
    • World leaders meet on dementia "time-bomb"
      The European Union’s health commissioner Tonio Borg has announced a €1.2 billion budget for health research in 2014-2015, including dementia and neurodegenerative diseases.
    • JPND's research calls
      The EU Joint Programme - Neurodegenerative Disease Research (JPND) has launched two calls for proposals aimed at encouraging research teams across Europe to investigate the cross-disease pathways in neurodegenerative diseases such as Parkinson’s and Alzheimer’s, and to identify new, innovative preventive strategies for these debilitating conditions.
    • Fox puts Parkinson's back in the spotlight
      Michael J Fox has returned to US television for the first time in 13 years to star in a new comedy show – thereby propelling him back into the nation’s hearts and, more importantly, bringing Parkinson’s back into the public’s minds.
    • Dedicated radio website for PwP's
      A person with Pa rkinson’s (PwP) has launched the first internet radio station to be devoted completely to people living with the disease and their carers.
    • 'Smaller' wins big at WPC film competition

      A heartwarming short film – made by a person with Parkinson’s (with the help of his daughter) entitled Smaller: A Poem About Parkinson’s – won both the Grand Prize and the People’s Choice Award at the World Parkinson Congress (WPC) 2013 Video Competition in Montreal, Canada, in October.

    • Finnish celebrate 30-year jubilee
      This year is set to be an action-packed year for members of the Finnish Parkinson’s Association as the organisation celebrates its 30th anniversary jubilee. Planned events include the country’s first ever Unity Walk.
    • PwPs and HCPs unite for Italian Parkinson's Day
      The fifth Italian Parkinson’s Disease Day has been hailed as “a new step towards the strengthening of compliance between doctor and patient”.
    • The spoon that gives PwPs a Lift
      A new spoon claims to help people with Parkinson’s eat more easily.
    • EU says 'patients over economy'
      Austerity-hit European Union (EU) members must avoid deepening inequality when cutting their healthcare budgets, the European Commission said recently.
    • New cross-border law should ‘speed up access to treatments’
      As of 25 October 2013, all European Union (EU) countries should have transposed the Directive on Patients’ Rights in Cross-border Healthcare – adopted in April 2011 – into their respective national laws.
    • EP DA partners with US DBS company
      The EPDA has entered into a new partnership with Boston Scientific, a leading global medical technology company that is committed to transforming patients’ lives through innovative device solutions.
    • Scientific breakthroughs excite PD community
      Breakthrough research into neurodegenerative diseases (NDDs) have made the headlines around the world recently, sparking excitement in the Parkinson’s community as to whether a cure is around the corner.
    • Telemedicine connects specialists to patients
      New US research has revealed the success of telemedicine for people with Parkinson’s (PwPs).
    • PD Stem cells getting ready for the clinic
      A groundbreaking attempt in the US to heal eight Parkinson’s patients with their own cells could move from research to the clinic this year.
    • Alcohol Abuse and Parkinson’s Risk
      Researchers have found that PwPs who abuse alcohol are more likely to develop Parkinson’s than patients who do not abuse the substance.
  • In the pipeline?
    Following recent news stories about potential breakthroughs for Parkinson’s research, EPDA Plus looks at the drugs that could have a dramatic impact on people living with the disease.

  • ‘A unique and special event’
    The third World Parkinson Congress welcomed 3,500 representatives from the international Parkinson’s community to Montreal, Canada, last October. WPC and EPDA veteran Lizzie Graham shares her experiences of the event.
  • A spotlight on Europe
    In recent issues, EPDA Plus has explained how the EPDA is working hard to continue building strong relationships with its members. In this issue, we report on the EPDA’s annual Learning in Partnership and General Assembly workshops, held in Warsaw last September, which aimed to find out in more detail some of the challenges members have to deal with when developing their organisations, and how the EPDA could help.
  • ‘I close my eyes and see Unity Walks all over Europe’           
    Parkinson Vereniging’s Joan van Haaften has a dream – that one day most European countries will he holding their own Unity Walks for people with Parkinson’s. Here he talks to EPDA Plus about organising the second Unity Walk in Amsterdam in the Netherlands – just 12 months after helping the EPDA launch the first ever European Unity Walk in 2012 – and what these events could mean for the European Parkinson’s community.
  • Don’t worry, be happy!
    Israeli psychiatrist Ariel Arieli has had Parkinson’s for more than 20 years. In this inspiring and thought-provoking article he describes the release from Parkinson’s symptoms he has gained through what he calls “spiritual relief”.
  • A journey from diagnosis to fulfilment with Parkinson’s
    Although Parkinson’s is a neurological condition in which physical symptoms degenerate, it is possible, after the shock of diagnosis, to rebuild yourself mentally and win the psychological battle with Parkinson’s. Tom Isaacs, person with Parkinson’s and cofounder of Parkinson’s Movement, describes his own journey: from diagnosis, introspection and denial, all the way to the fulfilment of advocacy and beyond.
  • Full steam ahead
    The EPDA is currently involved in the pioneering EU-funded REMPARK project, which is busy developing a wearable monitoring system that aims to identify and help control motor fluctuations in people with Parkinson’s. Tony Kirby gives an overview of the project and explains how readers can learn more.
  • A new light on Parkinson’s
    People with Parkinson’s, scientists, advocates and politicians gathered in Paris in April for a two-day conference to discuss the results of the REPLACES project, a major five-year European Commission research initiative. Tony Kirby reports on the highlights of the conference, held at the state-of-the-art Institute of the Brain and Spinal Cord at the Salpêtrière Hospital.

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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.