EPDA Plus Issue 12 - Winter 2010

Contents

• Ali awarded Irish PD honour
  Muhammad Ali, one of the greatest sportsmen the world has ever seen – and the most famous person with Parkinson’s – has become the Honorary President of the Parkinson’s Association of Ireland (PAI) following revelations that he is of Irish descent.
• Researchers win £5m to find a Parkinson's cure
  The Oxford Parkinson’s Disease Consortium, a team of researchers at the University of Oxford, has won the UK PDS’s Monument Discovery Award – and with it funding of £5m over five years for groundbreaking new research into finding a cure for Parkinson’s.
• Cara doubles her expectations
  A seasoned runner risked injury and exhaustion to raise more than £4,000 – more than twice the amount she was expecting – for various charities, including Parkinson’s, when she ran three major races within four weeks.
• Exercise programmes ‘protect against Parkinson’s’, says study
  Claims that long-term exercise protects against the loss of dopamine-producing cells and energy-producing mitochondria in neurons has been supported by new USbased evidence.
• Gardners’ question time
  Working with pesticides significantly increases the risk of developing neurological conditions, new study reveals
• Cure Parkinson’s Trust launches Self-Assessment Tool
  The Cure Parkinson’s Trust (UK) has launched a new resource to help people with Parkinson’s (PWPs) take more control over their condition.
• NAB to honour Michael J Fox for charity work
  Michael J Fox, actor, author and advocate for increased funding for Parkinson’s research, will receive the National Association of Broadcasters’ (NAB) distinguished service award at this year’s show
• Personal Care at Home Bill introduced to UK Parliament
  A Bill designed to help individuals with the highest care needs remain independent for longer has been introduced to the UK parliament.
• EU president backs disability demands at Freedom Drive
  The president of the European parliament has committed to fight for the rights of people with disabilities – including those with Parkinson’s – after 440 people from 21 countries met in Strasbourg late last year for the Freedom Drive.
• Rasagiline ‘can help’ fatigue in early Parkinson’s
  Rasagiline appears to be an effective treatment for symptoms of fatigue in people with early Parkinson’s, according to a recent study.
• Ropinirole ‘effective’ at reducing nocturnal symptoms in late PD
  Nocturnal symptoms in patients with advanced Parkinson’s not optimally controlled with levodopa may be reduced by once daily treatment with prolonged release ropinirole. This is according to results from a recent Efficacy and Safety Evaluation in Parkinson’s disease (EASEPD) Adjunct study.
• Cholesterol drug boost
  Simvastatin, a commonly used, cholesterol-lowering drug, may prevent Parkinson’s from progressing further, new research has revealed.
• IMI announcements
  The Innovative Medicines Initiative (IMI) – the public-private partnership between the European Commission (EU) and the European pharmaceutical industry – announced in September the topics of research of its second call for proposals from research consortia that aims to accelerate the discovery and development of new medicines in the field of cancer, inflammatory and infectious disease.
• MSD Supply shortage
  Merck Sharp & Dohme (MSD) has announced that, starting in late 2009, there will be a shortage in the availability of Sinemet (carbidopalevodopa) and Sinemet CR (carbidopalevodopa controlled release).
  
• Danish firm starts trial
  Danish biopharma company NeuroSearch A/S has initiated a clinical study of its ACR325 candidate drug for the treatment of dyskinesias in Parkinson’s.
• Counter attack
  The facts surrounding the growth in availability of counterfeit medicines is both frightening and staggering. Illegal online pharmacies are proliferating rapidly, yet the European public remains largely ignorant of the issue. As a result, argues EAASM Chair Jim Thomson, these problems need to be tackled head-on and the fakers need to be dealt with.
• The perfect Blend
  There is currently a terrifying void between the huge number of people living with neurological disorders and those that are qualified to nurse them. As a result, the European Association of Neuroscience Nurses has created the NeuroBlendTM framework in an attempt to turn the precarious situation around. Paul van Keeken and Christine Eberhardie report.
• 2010 set to be ‘year of action’ for EPDA
  The EPDA’s annual general assembly, held in Budapest at the beginning of October, was hailed as the best for many years, with the programme packed full of exciting initiatives due to be carried out in 2010.
• EPDA annual conference highlights the benefits of working together
  The EPDA’s annual conference in Budapest, Hungary, held in early October, centred on working together, sharing experiences and promoting a positive outlook.
• Clicking into high gear
  A unique partnership between the EPDA and two pharmaceuticals companies has culminated in the launch of www.myPDinfo.com, an exciting new online resource for people with Parkinson’s. Dominic Graham reports on what can be achieved when patient organisations and industry work together.
• Huge gong in EPDA’s sights
  Life with Parkinson’s campaign shortlisted for prestigious European award.
• An art-warming exhibition
  Art and Parkinson’s was the theme of an exhibition organised by Parkinson Luxembourg (PL) in Luxembourg City in mid-October.
• A humbling experience
  Message from new EPDA President Knut-Johan Onarheim.
• School’s IN for the summer
  The first Parkinson’s disease summerschool was held in Turkey last July and has proved an outstanding success, combining teamwork, research and boundless raw enthusiasm. The initiative’s founder Paul de Roos talks to Dominic Graham about his hopes for the project and what it could mean for Parkinson’s in the future.
• Speculating to accumulate
  In a few short years, the internet has become the fastest, most prolific and influential medium in modern society – and with its bandwagon showing no signs of slowing, the EPDA is getting on board with the launch of its own YouTube channel. Chiu Man takes us on a journey through the past to a hopeful future of global sharing.
• Journey inwards
  At medical congresses and patient forums across Europe, a new band of UCB-sponsored Parkinson’s advocates are introducing audiences to their experiences of living with the disease. By describing their journeys, the group, consisting of people with Parkinson’s and their carers, are showing others how they are learning to live and adapt to their condition.
• A date to remember
  World Parkinson’s Disease Day is soon to mark its thirteenth year in April, which means a time for celebration for Parkinson’s associations around the world. Dominic Graham trawels the archives and looks back at some truly unique World Day occasions.