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THE VOICE FOR PARKINSON'S IN EUROPE

EPDAUPDATE

MARCH 2013  ●  www.epda.eu.com

WELCOME

Good news! Spring is finally in the air... which means longer and brighter days for all of us (hopefully!). Happily, the EPDA also has great news to share, and over the next few minutes you'll learn the latest about our some of our key projects and initiatives. We are particularly delighted to announce the exclusive news that September 2014 will see the second European Unity Walk – last year's event was such a success we hope you'll all support us and Parkinson Luxembourg next year too. There's much more to discover though and we hope you will be as excited as we are about what we have planned. Please let us know if you've any thoughts or comments – simply email us at info@epda.eu.com – we always want to hear what you think. Good luck with all your Parkinson's World Day preparations – here's to a bright and wonderful spring.

READ ALL ABOUT IT!
     
European Unity Walk Unity Walks Working with Social Media

2014 EPDA UNITY WALK CONFIRMED!

The EPDA and national Parkinson’s organisation Parkinson Luxembourg are proud to announce that the second European Unity Walk will take place in Luxembourg in September 2014. The debut Unity Walk was a huge success last September after more than 1,000 people from 25 countries moved together for Parkinson’s in Amsterdam, the Netherlands. “We are delighted to reveal the imminent partnership between the EPDA and the Luxembourgers,” said EPDA president Knut-Johan Onarheim. “Details are in the early stages at the moment so watch this space – and look out for news in EPDA Plus, our website and social media platforms. We’ll have a date for you to save in your diaries very soon.” Click here for more information about the European Unity Walk.

UNITY WALKS ON THE MARCH

It seems the EPDA and Parkinson Luxembourg aren’t the only ones with Unity Walks on their minds... Parkinson’s Association of Ireland and the Israel Parkinson’s Association are also arranging a series of walks in April, while other EPDA members are considering future awareness-raising walks too. And, of course, let’s not forget the annual US Unity Walk in New York on 27 April or the Danish organisation Parkinsonforeningen’s second annual unity walk on 25 May 2013. The Dutch organisation, Parkinson Vereniging, which helped the EPDA organise last year's European Unity Walk in Amsterdam, is hosting its own individual event later this year too. “It’s so exciting to think that there are now multiple Unity Walks taking place in Europe when just two years ago there were none,” said EPDA vice-president Susanna Lindvall. “We hoped our first European Unity Walk would inspire our members to get involved and we’re delighted things are moving in that direction.”

NEW UNITY WALK TOOLKIT

Continuing the Unity Walk theme, the EPDA is developing a toolkit to add to its growing series of booklets that offer practical information and guidance on a range of topics that patient organisations can use to raise the profile of Parkinson's in their respective countries. The new toolkit – the Guide to organising a Unity Walk – aims to inspire national Parkinson's organisations into setting up their own local Unity Walks to raise awareness of Parkinson's in their own country. The toolkit is due to be available to download for free via the EPDA website in the coming weeks.

Move for Change Medikidz Win a Kindle!

MOVE FOR CHANGE SURVEY ENDS

The final Move for Change online survey officially closed at the start of 2013, bringing to a close the EPDA’s three-year data collection campaign. “We would like to thank all of our members – and their members – for taking the time to complete our questionnaire,” said EPDA president Knut-Johan Onarheim. “Thousands of you participated, making the surveys the largest of their kind in Europe.” The final survey’s data is now being analysed, the results of which, like the first two surveys, will hopefully be published in a peer-reviewed journal. “We look forward to these final set of results, which will be used in conjunction with the first two surveys to assist our members in their quest for change in their respective countries.” Click here for more information about the campaign and to download the first two EJON reports.

ARE YOU READY FOR MEDIKIDZ?

The EPDA, working in partnership with Medikidz – a global initiative set up by doctors to explain medical information to children, will soon launch a comic book aimed at educating younger people about Parkinson’s and its impact on older family members. “We appreciate how difficult it is to explain a complex condition such as Parkinson’s in a simple and informative way – while making it fun to read so that all the important information can be absorbed,” said EPDA director of fundraising and global communications Lizzie Graham. “This unique and exciting comic will be available from 11 April and further information can be found by visiting www.epda.eu.com/medikidz. Please let us have your feedback once you have read it and we hope it helps families across Europe.”

WRITE TO US AND WIN A KINDLE!

The EPDA’s flagship magazine EPDA Plus is once again giving away an Amazon Kindle e-book reader as it continues to encourage a greater sense of community with its readers. “We want to hear your views on any Parkinson's-related issue that really matters to you,” said EPDA Plus editor Dominic Graham. “Whether you're a person with Parkinson's, a healthcare professional, a politician or part of the treatment industry – your voice counts and we want to hear it and publish it.” Click here for more details about the giveaway – the deadline for submission though is 30 March so get writing! Good luck!

 

MEP Support Network

MEP NETWORK ON THE RISE

The EPDA has signed the 50th MEP to its growing MEP Support Network. The network is an informal interest group that is committed to supporting the EPDA in its efforts at raising awareness of Parkinson’s disease and ensuring it becomes an EU healthcare priority. “I am delighted to announce that Romanian Liberal MEP Cristian Silviu Buşoi is the network’s latest recruit, and I hope that many more will follow when the EPDA celebrates World Parkinson’s Disease Day in the European Parliament on 10 April [see below],” said EPDA political affairs officer Heather Clarke. Click here for more information about the network and a full list of its members.

European Parliament Regional Project STRONG

GRAND PLAN FOR WORLD DAY

On 10 April, the EPDA will again be celebrating World Parkinson’s Disease Day in the European Parliament. Our Brussels team will encourage more MEPs to sign the Pledge for Parkinson’s and join the MEP Support Network (see above). “When we launched the MEP Support Network last year we were thrilled with the response,” said EPDA political affairs officer Heather Clarke. “As well as raising awareness of the severity of Parkinson’s we have used the network to influence EU reports on Horizon 2020, the EU research programme and on clinical trials." The online Pledge is open to anyone and everyone to sign – and the EPDA asks you to do so now! Simply click here. You can find more information about the EPDA’s EU activity here.

'IT'S ALL ABOUT TEAMWORK'

One of the EPDA's new initiatives – the Regional Project – is about to begin. The Regional Project brings together neighbouring EPDA member organisations (MO) to explore the potential for working together on initiatives and activities in order to share ideas and experience and increase awareness of Parkinson's in each country. The first Regional Project will focus on the Nordic region, and the first meeting will take place in Helsinki, Finland, in May 2013. The EPDA member organisations taking part are Parkinsonforeningen (Denmark), Parkinsonfelagio (the Faroe Islands), Suomen Parkinson-liitto ry (Finland), Parkinsonsamtokin a Islandi (Iceland), Norges Parkinsonforbund (Norway), and ParkinsonForbundet and Neurologiskt Handikappades Riksforbund (Sweden). A number of EPDA members and representatives from the treatment industry will also be present. More details will be available in the coming weeks, but if you would like more information about the Regional Project please email info@epda.eu.com.

EPDA'S PLAN GOING STRONG

Another new EPDA project – STRONG (Support The Regional Organisations Groups – Now) – is also nearly ready to launch. “STRONG is a new EPDA initiative that aims to provide support to the member organisations that would benefit from our help the most,” said EPDA secretary general Amanda Worpole. We believe that if we can help some of our members become stronger and more effective Parkinson’s organisations – that are able to provide resources and educational programmes for people living with the disease in their own countries – we will inspire other members to do the same in the years to come.” The first meeting is taking place in March in Barcelona and it will involve the EPDA, the Federación Española de Párkinson (FEP) and three of its member organisations. Two key neurologists as well as a number of representatives from the treatment industry will also be present. More details will be available in the coming weeks, but if you would like more information about STRONG please email info@epda.eu.com.

General Assembly

IMPORTANT DATE FOR YOUR DIARY

The EPDA's Learning in Partnership workshop and annual General Assembly will be held from Friday 20 to Sunday 22 September at The Sheraton Warsaw Hotel, Poland. You will be able to register to attend the workshops here (www.epda.eu.com/general-assembly) from 1 May.


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