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EPDAUPDATE |
WELCOME |
e-newsletter FEBRUARY 2011 |
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Welcome to the first EPDA Update of 2011. With the new year comes new projects and initiatives led by the EPDA and other organisations interested in Parkinson's all over the world, and you can read about them here every other month. As ever, we welcome your news, thoughts and views so let us know any developments that you are working on over the coming months by emailing us at editorial@epda.eu.com. See you in the spring.
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EPDA NEWS |
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TULIP TIME!
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A GOLDEN
ACHIEVEMENT |
EPDA'S EC
PROJECTS |
| Wearing the EPDA's Red Tulip – the worldwide symbol of Parkinson's disease – is the perfect way to show your support on World Parkinson's Disease Day, which is celebrated annually on 11 April in commemoration of Dr James Parkinson's birthday. By supporting the Red Tulip, everybody can help raise awareness and show support for people living with Parkinson's and their families around the globe. For more information on how to purchase Red Tulip pins, please contact info@epda.eu.com. |
A film produced by Animech Sweden on behalf of the EPDA has won a Gold award at the 2010 International Global Awards competition, which honours the world's best healthcare advertising. The Unknown Mr Parkinson includes poignant interviews with two people with Parkinson's and their families that describe the enormous impact non-motor symptoms has had on all their lives. "It's a prestigious award and not too many productions are considered, so naturally we are delighted," said EPDA president Knut-Johan Onarheim. The video, part of the EPDA's Awareness campaign materials, is available to view on the EPDA YouTube channel and Awareness website. |
The EPDA is playing an important role in two projects that were submitted to the European Commission's 7th Framework Programme in January. The specific goal of REMPARK is to develop a Personal Health System to identify motor status in real time and to develop a gait guidance system. PARTAKE, meanwhile, is a Personal Health System for the provision of patient services at home to distinguish between voluntary movements and involuntary motor complications to allow people with Parkinson's and their carers to monitor the long-term progression of the disease and to optimise their medication. The EPDA is a partner in both projects and we will keep you advised of their progress. |
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DON'T FORGET TO SIGN |
| Despite estimates indicating that up to 50% of people with Parkinson's experience pain, it is still a very under-recognised symptom. As a result, the EPDA, treatment company Pfizer and a number of other leading patient and citizen organisations across Europe have joined forces to call for real change through the Can You Feel My Pain? campaign. Please encourage your members to visit www.epda.eu.com/cyfmp and sign the Bill of Rights, share their personal stories about chronic pain and capture the sense of chronic pain through photography. The campaign needs your support. |
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GENERAL NEWS |
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CROSS-BORDER BOOST |
| European MPs have backed healthcare legislation aimed at making it easier for EU citizens to get medical treatment in other EU member states. The directive should help patients get reimbursed in their home countries, and when a hospital stay is required the directive says health services can request prior authorisation from doctors in the patient's home country. The prior authorisation clause is intended as a safeguard against any unexpected surge in foreign patients. The directive passed a second reading in the European Parliament in Strasbourg in January, meaning the new rules will apply across the EU in about two years' time. According to a parliament report, "the aim is absolutely not to encourage cross-border healthcare as such, but to ensure its availability, safety and quality". |
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PEERS AND
PARKINSON'S |
AN ITALIAN
WARNING |
IT'S TIME
TO TREMBLE |
| UK peers have put pressure on the government's Health Minister Earl Howe to explain inequalities in access to health and social care for people with Parkinson's (PWPs). At a recent House of Lords debate, Baroness Gale (pictured), chair of the All Party Parliamentary Group (APPG) for Parkinson's, demanded answers over the so-called 'postcode lottery' in Parkinson's services after they came to light in the APPG's 2009 inquiry,
Please mind the gap: Parkinson's disease services today. "Access to the right services can enable PWPs to live a more independent life for longer and preserve dignity and quality of life," said Baroness Gale. |
A 70-year-old Italian man with Parkinson's is suing his doctors claiming he became addicted to gambling after being prescribed drugs to help his disease symptoms. Paolo Chisci, a retired shopkeeper from Tuscany, says he bought up to 500 instant lottery scratchcards a day – and spent €300,000 in total – before his family discovered that compulsive gambling was a little-known side effect of his dopamine agonist drugs. The regional health authority has reportedly issued summons against the two pharmaceutical firms that manufactured the drugs – the Italian subsidiaries of Eli Lilly and Boeringher Ingelheim. |
A US-based choir called the Tremble Clefs choir has made it its mission to improve the communication skills of its members – all people with Parkinson's – through singing. The group incorporates a speech therapy programme into a wide range of holiday songs, spirituals, and show tunes. You can see some examples of their singing via their website www.trembleclefs.com and on the social networking site, YouTube. Simply go to www.youtube.com and search for Tremble Clefs.
See also JF&CS Parkinson's Family Support Choral Group "The Tremble Clefs". |
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NETWORKING IS WORKING |
| Parkinson's UK's new Parkinson's Network – a social media tool that offers health and social care professionals free up-to-date information about Parkinson's tailored to their own professional needs – is now 1,000 members strong. Members include pharmacists as well as doctors, nurses, Allied Health Professionals and social care professionals. Go to the Parkinson's UK Professionals' Network website for more information. |
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| MUSIC MEDICINE? |
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| A US study is to test the impact of music on Parkinson's after a man's unusual experience attending classical concerts. "When I sit down to listen my hand is shaking; as soon as the music starts, the shaking stops," said Russ Eplett, a person with Parkinson's (PWP) from Indiana in the US. Eplett's story led to much interest being taken and the end result is a pilot study that is being carried out by the Fort Wayne Philharmonic Orchestra's music therapy department and the Fort Wayne Parkinson's Support Group. The orchestra will perform three free concerts where 35 PWPs will fill out a simple survey to assess their symptoms before, during and after the performances. |
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LIGHTING UP
THE DARK |
ON YOUR
BIKE |
QUESTIONS
OF RACE |
Rock legend Bruce Springsteen recently played a surprise set for the crowd at a Parkinson's fundraising and awareness concert in the US state of New Jersey. 'The Boss' performed at the Light of Day benefit concert in January, which featured numerous other high-profile artists. US music industry veteran Bob Benjamin started the Light of Day shows back in 2000 in order to raise money to help those living with the disease. Originally only a one-day event, the show has now successfully expanded into four days of shows in Asbury Park.
Photo: John Cavanaugh [www.lightofday.org] |
An American person with Parkinson's is to feature in a film about his cycling journey across his home state of South Dakota. Larry Smith, a former police officer and now a professional baker, is to ride his recumbent tricycle from Aberdeen to his home in Vermillion in the summer to raise awareness of the disease. Documenting the ride will be a team of filmmakers. Their project is to be called Ride with Larry. "The original idea was for Larry to bike across the US," said a spokesperson. "But the condition he's in and the stage of his Parkinson's, it's not realistic." Smith, now 61, was 42 when he was diagnosed with Parkinson's. |
African-American people with Parkinson's (PWPs) and those with lower socioeconomic status have more advanced disease and greater disability when they seek treatment from Parkinson's specialists, according to a study from the US-based University of Maryland School of Medicine. The researchers found that race, education, and income were each significant and independent factors in determining a PWP's level of disability. The disparities in healthcare are associated with greater disease severity and earlier loss of independence. The study was published in the online edition of Archives of Neurology. |
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RESEARCH NEWS |
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ABNORMAL PROTEINS |
The misfolding of abnormal proteins in brain cells is a key element in Parkinson's development, a recent study suggests. It said that the sick proteins slowly move between cells, eventually triggering the destruction of the new host cell. The discovery could potentially lead to new therapeutic strategies for neurodegenerative diseases aimed at blocking the spread of protein misfolding throughout the brain. The study, published in the Journal of Clinical Investigation, reveals that damaged alpha-synuclein proteins (which are implicated in Parkinson's) can spread in a 'prion-like' manner, an infection model previously described for diseases such as BSE (mad cow disease).
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| 'GOLDRUSH' BREAKTHROUGH |
| Hundreds of proteins crucial to brain health have been identified, unlocking a new frontier in the treatment of conditions from Parkinson's to autism. Experts have discovered that faults in these 'repeat offender' brain proteins are responsible for 130 conditions. The breakthrough could greatly speed the development of new drugs for degenerative and psychiatric illnesses, as well as allowing better diagnosis. It also means that a 'magic bullet'-type drug could be created to treat several illnesses.
Professor Seth Grant, a neuroscientist at the UK-based Wellcome Trust Sanger Institute, said: "There is a potential goldrush, a whole new frontier for drug discovery."
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CNS
SHAKEUP |
PROSAVIN
PD HOPE |
AN INNOVATIVE
THERAPY |
| Pharmaceutical firm Proximagen has snapped up two central nervous system (CNS) drug development programmes from fellow UK drugmaker GlaxoSmithKline (GSK). Proximagen said it has signed an exclusive agreement with GSK for the global rights to the two programmes, the most advanced of which is ready to enter clinical development, substantially boosting its existing portfolio of more than 15 innovative therapeutic projects addressing diseases in the CNS, inflammation and oncology arenas. |
Gene therapy company Oxford BioMedica has announced encouraging safety results from the first human trials of its ProSavin Parkinson's treatment. The UK company said ProSavin continued to be safe and well tolerated following treatment with an enhanced technique to reduce surgical delivery time. So far, nine patients have been treated at the Henri Mondor Hospital, Paris, and showed some improvement in motor function, with an increase in symptom-free time. Regulators are supporting the company's plan to give a higher dose to six patients next year and to open a second test site at Addenbrookes Hospital in Cambridge, UK. |
With a grant of $475,000, the Michael J Fox Foundation is funding preclinical development of an anti-Parkinson's vaccine by AFFiRiS AG. The vaccine, known as PD01, targets the protein alpha-synuclein and might offer for the first time a possibility for a treatment that can slow or stop the progression of Parkinson's. The basis of PD01 is the company's AFFITOME® technology, which has already delivered, among others, two vaccines from AFFiRiS AG for the treatment of Alzheimer's disease. |
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FLOWER POWER |
| Melatonin and silymarin (a compound found in milk thistle) show promise in the treatment of Parkinson's, according to preliminary study findings from the Journal of Pineal Research. In tests on mice with an animal model of Parkinson's, researchers found that melatonin and silymarin offset loss of function in nerve cells (an effect that may help slow the progression of Parkinson's). Both melatonin and silymarin are known to act as antioxidants and knock out free radicals (chemical byproducts that damage DNA). According to the study's authors, the substances may help fight Parkinson's by counteracting oxidative stress (a Parkinson's-associated destructive process that results from overproduction of free radicals). |
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PARKINSON'S
GOES TO POT |
PLAYING
RAT AND MOUSE |
GLAUCOMA
AND PD |
| An Auckland-based study is to investigate cannabis as a possible cause and treatment for Parkinson's. Peter Freestone, of Auckland University, has been awarded almost NZ$172,000 to carry out the two-year project. The study would "provide much-needed information for evaluating the therapeutic potential of these substances for Parkinson's disease", said Freestone in his funding application. |
Since 1989, mice – not rats – have been the lab animal of choice because it wasn't possible to manipulate the rat's genome. Scientific advances over the last three years, however, have now made it feasible to easily tinker with rat genes, creating the possibility of far better models of certain human diseases, and potentially shortening the time it takes to develop medications. As a result, the Michael J Fox Foundation has hired US-based Sigma Advanced Genetic Engineering Labs (SAGE) to develop a rat model of Parkinson's. It's too early to know for certain, but Edward J Weinstein, director of SAGE, thinks his company will be able to more closely mimic Parkinson's in a rat than has been possible in a mouse. |
Researchers at the US-based Kennedy Krieger Institute and four other institutions say they have discovered where the biological process of blinding begins for glaucoma – perhaps leading to new ways to treat the condition and other neurodegenerative diseases. The biological pathway identified by the researchers is similar to Parkinson's, the researchers said. "These findings are very exciting because they give us several novel targets for future interventions," said Dr Nicholas Marsh-Armstrong, senior study author. The findings were published in the Proceedings of the National Academy of Sciences. |
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LEUKEMIA
LINK |
CLUES TO
CELL DEATHS |
SHAKING
CENTURY |
| A drug already used in some leukemia patients has prevented brain cells linked to Parkinson's from being destroyed in mice – a finding that could point to a way to slow progression of the disease, US researchers are reporting. The research is early, and the drug used in the experiment doesn't work well in the human brain; however, similar drugs are in development that might better penetrate the brain as well as target the specific enzyme at fault more precisely, scientists said. The results were published in the Journal of Neuroscience. |
Researchers at The University of Texas Health Science Center have discovered a process that may begin to explain why the vast majority of people with Parkinson's (PWPs) develop the disease. The researchers claim to have demystified a process that leads to the death of brain cells – or neurons – in PWPs. When researchers blocked the process, the neurons survived. The findings could lead to an effective treatment to slow the progression of Parkinson's, rather than simply address symptoms. Further studies could lead to a diagnostic test that could screen for Parkinson's years before symptoms develop, said a spokesperson. |
Neurologists at the US-based Rush University Medical Center have started a randomised, controlled pilot study to test a 100-year-old, non-invasive treatment developed by French neurologist Jean-Martin Charcot, an authoritative 19th century doctor for Parkinson's and other movement disorders. Charcot designed a non-invasive therapy using a shaking chair to treat his patients. Reportedly, those who used the shaking chair had less pain and stiffness and improved sleep quality. "More than a hundred years later, we are testing Charcot's observation to see if it really does improve symptoms of Parkinson's disease," said Rush's Dr Christopher Goetz. |
| BOTOX BOOST |
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| Doctors are finding innovative new ways to take advantage of the muscle-paralyser Botox to treat people with Parkinson's (PWPs). The well-known wrinkle remover can help relieve the pain and tremors that often come with the disease, say scientists. At the Muhammad Ali Parkinson Center in Phoenix, PWPs and other muscular disorders get multiple targeted injections of botulism toxin, guided by electromyography. Botox is FDA-approved to treat PWPs and injections are administered about every 90 days. Although it's not a cure, doctors say it can still relieve some of the worst symptoms and help PWPs avoid surgery. |
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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. |
| Copyright © European Parkinson's Disease Association | All rights reserved. |
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