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EPDAUPDATE |
WELCOME |
e-newsletter DECEMBER 2010 |
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Welcome to the last EPDA Update of 2010. This year has been an extremely busy one for the EPDA and the entire Parkinson's world, and we hope you've enjoyed keeping up to date with us. Unsurprisingly, next year is looking even more action-packed, and we look forward to letting you know some of our initiatives over the coming months. Finally, everyone at the EPDA would like to wish each and every one of you a very Merry Christmas and a Happy New Year. See you in 2011!
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EPDA NEWS |
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MORE TIPS
AND TRICKS |
CARE TO
BE AWARE |
GET READY
FOR CHANGE |
| Two more EPDA toolkits have been produced and made available to download via the EPDA website. The first is designed to help EPDA members – and anyone else interested – learn more about working with the media. The second provides tips and knowledge about working with the treatment industry. Download the toolkits at www.epda.eu.com/epda-publications/media-toolkit and www.epda.eu.com/epda-publications/treatment-industry-toolkit. |
The materials for the second part of the EPDA's Life with Parkinson's awareness campaign (which focus on non-motor symptoms) were launched in September at the World Parkinson Congress. They will be available at www.parkinsonsawareness.
eu.com/non-motor-symptoms in at least 10 languages (English, French, German, Greek, Italian, Norwegian, Romanian, Spanish, Swedish and Turkish) by spring next year. |
The second European Parkinson's Action Day – part two of the EPDA's three-year Move for Change campaign – will take place on 11 April 2011. The EPDA will once again be seeking the help of you – our member organisations – to help with the translation and promotion of the European-wide online survey by spreading the news as widely as you can throughout your respective countries. It is only with your help that we can reach the 200,000 people that all your organisations represent. See the next EPDA Update for further news. |
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DATE FOR YOUR DIARY |
The EPDA Annual General Assembly and Learning in Partnership workshop will be held from 30 September to
2 October 2011 in Surrey, the UK. More news about this major annual event – so necessary for the EPDA and its membership – will be available in the next edition of EPDA Update. |
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GENERAL NEWS |
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A GRAND INVITATION |
| The Movement Disorder Society (MDS) is inviting healthcare professionals who work with people with movement disorders to join the society and participate in its activities. The MDS is an international group of mostly physician members. Until 2005, few health professionals were members and even fewer were active participants. Activity has increased, however, and in 2009 the MDS established a webpage for health professionals, which is fast becoming a resource for neurologists and all members of the multidisciplinary team to understand more about the profession. If you're interested in the society, visit www.movementdisorders.org/healthprofessionals and complete the survey. You can also consider joining the MDS at a reduced annual rate ($100). Please share this message with your colleagues to spread the news. For more information, contact ishschudrowitz@movementdisorders.org and complete the 2010 needs assessment survey. |
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BACKING FOR
PRESCRIPTIONS |
PETITION FOR
BETTER CARE |
HELPLINE NETS
APPROVAL |
| The European Parliament has endorsed a report that supports providing more information to the general public in relation to prescription medicines. The vote – which took place in November and was carried by a substantial majority – has been welcomed by the European Patients' Forum (EPF), which said the report, compiled by Christofer Fjellner MEP, is "a substantial improvement" on the original Commission proposal. "Above all it achieves a shift from a quite narrow focus on the rights of industry, to the right of patients to access high-quality, non-promotional information about the medicines they take," said the EPF. |
A petition appealing for better care for people living with Parkinson's (PWPs) has been handed to the UK government. EPDA member Parkinson's UK wants care services minister Paul Burstow to ensure that PWPs get fair access to treatment and services that allow them to lead lives which are as close to normal as possible.
The voluntary organisation also wants the government to formulate a national framework with guidance for Parkinson's treatment to ensure no one is left behind.
Burstow welcomed the receipt of the Fair Care for Parkinson's petition, which had been signed by more than 14,000 supporters. |
A helpline supporting people with Parkinson's and their carers has been given the official seal of approval. The Parkinson's UK helpline, which answers 24,000 calls each year on subjects such as symptoms and treatments for the disease as well as benefit queries has been given the Quality Standard of The Helplines Association (THA). Such accreditation means that the helpline has passed more than 100 assessment criteria regarding the quality of support provided. |
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WAR BREWING IN WALES |
| Professor Mike Owen, director of Cardiff University's new Neuroscience and Mental Health Research Institute, has said the time has come to declare war on mental illness. The cost to the UK economy of mental ill health is of the order of £77bn a year and £23bn for dementia – yet only 5% of medical research goes into mental health, despite 15% of disability resulting from disease being due to mental illness. "There has never been a better time to launch a concerted effort to tackle these conditions," he said. |
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| FOX ACTS
FOR REAL |
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| Michael J Fox has found a new way of raising awareness of Parkinson's – by using his real-life disease symptoms while 'acting' in an episode of a hit US drama. Airing in November, Fox played a talented disabled attorney
who uses his neurological condition to sway a jury during a case against a pharmaceutical company. "It was a lot of fun," he said. "For me, a lot of times I am trying to play down certain physical experiences I am having, where this time I could let it rip." Fox's performance was well received and it has been said he will reprise his role in the future. |
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RESEARCH NEWS |
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EARLY PD
DETECTION? |
SENSIBLE
SENSIDOSE |
AN INNOVATIVE
THERAPY |
| A blood test to diagnose Parkinson's is being developed by British scientists. The test measures levels of alpha-synuclein, a protein released into the bloodstream once the disease sets in. The study suggests that this should help detect the disease in the very early stages. Research leader Dr Penny Foulds said: "The earlier we can treat Parkinson's the better. By the time symptoms appear, around 70% of the relevant brain cells may have been lost." |
Sensidose AB in Uppsala, Sweden, has developed a system for individual dosing of drugs for the treatment of Parkinson's in tablet form. The system includes an electronic dosing device for drugs given in the form of microtablets. Two clinical Phase I studies have already been carried out, which demonstrates the system's concept works well clinically. In addition to the fact that the microtablets enable a personalised dosing in tablet form, the studies also show that the system enables a more steady clinical effect compared to today's standard tablets. |
A new therapy programme that helps people with Parkinson's (PWPs) with speech and movement has been offered at Allied Rehab in Scranton in the US. The intensive programme, called Lee Silverman Voice Therapy Big and Loud, helps PWPs change their perception of their movements and speech. The therapy, named after a PWP who helped pioneer the techniques, has been refined following research on how best to help people with the disease retain their ability to move and speak. |
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LOW VITAMIN D
LEVELS? |
POSSIBLE NEW
PD DRUG? |
ULTRASOUND
EXPLORATIONS |
| Low levels of vitamin D in the blood may increase the risk of developing Parkinson's, according to a study conducted by researchers from Finland's National Institute for Health and Welfare. Researchers took blood samples from 3,000 people between 1978 and 1980, then followed them for 30 years. They found that people with the lowest levels of vitamin D were three times more likely to develop Parkinson's in that time than people with the highest levels. |
A recent study from Northwestern University, Chicago, has identified a possible new drug for people with Parkinson's. According to researchers, Isradipine – a drug used to treat high blood pressure – has the potential to slow the aging of dopamine cells, whose death in the brain leads to Parkinson's. "We are hopeful that Isradipine – or a drug like it – will protect dopaminergic neurons and slow the disease," said D James Surmeier, one of the lead researchers. "Isradipine is attractive in part because it has been used safely for decades." |
Scientists at Arizona State University are exploring the use of ultrasound to stimulate brain activity without the invasive procedures or internal implants required for current electrical stimulation methods. Their new transcranial-pulsed ultrasound mechanism can target very specific regions of the brain as small as a few cubic millimetres and penetrate much deeper than traditional ultrasound. With current methods, these regions of the brain can only be stimulated using surgical procedures and implants running on battery power. |
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NEW SPEECH
ADVANCES? |
WORLD'S FIRST
TWISTED LIGHT |
LCT CURE
GETS CLOSER |
| The severity of Parkinson's symptoms could be accurately monitored remotely through analysing a person's speech patterns, a new study suggests. The research, carried out by scientists from Oxford University and Denver, Colorado, examined almost 6,000 speech recordings from 42 people with Parkinson's. The team found that their new algorithms were able to use this speech data to estimate overall symptom severity with an accuracy very close to assessments made by clinicians. A report of the research was published in a journal by the Royal Society. |
Scientists have for the first time created "super twisted" light that can be used for more effective disease and virus identification. The process involves polarising a light beam to create a kind of light corkscrew, which then reflects off a gold surface to twist the vortex even tighter. Alzheimer's and Parkinson's are two conditions now being examined using this new technique. |
Living Cell Technologies (LCT) – a global pioneer in the field of cell encapsulation – has announced that its NTCELL cell implant product for neurodegenerative conditions has demonstrated effectiveness in two pre-clinical models of Parkinson's. "NTCELL offers those who live with neurodegenerative conditions a new hope and an alternative to the ongoing deterioration that is expected despite the best of conventional therapies," said LCT medical director Professor Bob Elliott. |
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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