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Dear Patient/Member,
Would you like to help improve the lives of thousands of
Cervical Dystonia patients worldwide?
If so, I am pleased to invite you to take part in the first International Cervical Dystonia Patient Survey in partnership with Dystonia Europe and Dystonia Medical Research Foundation.

The main objectives of this survey are the following:

    * Assess the life impact of cervical dystonia on a broad selection of international patients
    * Investigate and identify the differences in the management and care of cervical dystonia patients worldwide
    * Identify real areas of life improvement for international cervical dystonia patients

Please click here to take part in the survey

https://www.visioncriticalsurveys.com/ICDPsurvey

The International Cervical Dystonia Patient Survey is an easy to use multiple choice questionnaire and will take a maximum of 15 minutes to complete.

The data will be used to implement changes in the overall approach to care of cervical dystonia patients.

All responses to this survey are completely confidential and for informational purposes only.
No personal details will be retained or shared with third parties.

We thank you for your participation.




 


'Thinking Ahead' Campaign Highlights Health Crisis in Neurological Care

Dublin, Ireland, Monday January 17th 2011: A new campaign ‘Thinking Ahead’ highlighting the current health crisis in neurological care, launched today in a call for the prioritisation of neurological care by the next government. The campaign is driven by the Neurological Alliance of Ireland (NAI), the national umbrella organisation representing over 30 neurological charities.

Almost one-fifth of people in Ireland have a neurological condition such as stroke, epilepsy, migraine, Alzheimer’s disease, acquired brain injury and multiple sclerosis. Ireland’s neurological care lags far behind the rest of Europe with the lowest number of neurologists and consultants in rehabilitation medicine among our European partners.

’Thinking Ahead’ calls on the incoming government to develop services, working in partnership with neurological charities, that meet the needs of people with neurological conditions for diagnosis, treatment and long term support and rehabilitation.

Professor Orla Hardiman, Consultant Neurologist in Beaumont Hospital and spokesperson for ‘Thinking Ahead’ is urging the public to get behind the campaign: “On behalf of all the people with neurological conditions and their families, we support the current HSE focus on neurological care, recognising that this is a major challenge facing our health system.”

She continued: “However, the incoming government must realise that neurological conditions will be the cancer of the future, in terms of their impact on developed countries like Ireland. The number of people developing neurological conditions as our population ages will increase by over 160,000 in the next ten years. The next government must make neurological care their top priority for health.”

Today, the NAI also launched the first nationwide online survey to allow people with neurological conditions and their families to report their experiences of neurological care.

A key element of ‘Thinking Ahead’ is the critical importance of charities to neurological care in Ireland. Irish charities save the state millions of euro each year by subsidising the cost of neurological care through fundraising for vital services, including specialist nurses, physiotherapy and home care supports and through mobilising volunteers. The health service is reliant on the expertise and experience of these charities to provide specialist care and support to people with neurological conditions and their families.

Launching the campaign today, Anne Winslow, Chair of the NAI said: “Further cuts to State funding for neurological charities will have a devastating impact on those who rely on services that are provided in a targeted and cost effective manner. The State must realise its obligations to more than 700,000 people with neurological conditions and their families. It can do that by putting in place the framework of statutory and voluntary services that is so desperately needed”.

‘Thinking Ahead’ will launch a detailed action plan for neurological care in the coming months, outlining a clear set of recommendations for the incoming government. NAI will also be using National Brain Awareness Week, 7th to 13th March to organise a series of events nationwide to promote the campaign.

For further information on the campaign, visit www.thinkingahead.ie



 



New iPhone App Gives the Gift of Speech

County Louth man Karl McEvoy who has a rare neurological movement disorder known as dystonia has been given the gift of speech thanks to a new revolutionary iPhone App developed by his father. Karl, now 21 years old, developed dystonia at 4 years of age resulting in him being unable to communicate verbally with many people apart from his family.
The new App for the iPhone, ‘TalkforMe’, has been developed by Dundalk father Hugh McEvoy and gives those with a range of speech impaired disabilities a tool to get their voices heard.


‘TalkforMe’ is a multipurpose communication tool that allows people communicate their needs by using images that they take with their iPhone and sentences that they type in which are then spoken in over 30 languages.

The App can be completely customised to the needs of the individual and can be set up to contain relevant user identified groups of pictures and sentences which can be vocalised and translated into different languages.


The beauty of the ‘TalkforMe’ App is the fact that all the groups are user defined which means they are relevant to the individual/parent/guardian/teacher who sets it up. Users of this App could also include those who regularly travel to other countries and people who have speech or learning difficulties. The basic idea is that the user can add as many pictures and sentences as they wish and organise them into relevant groups. The user can call on this vast library of content to communicate their message to another person by just clicking on an item which consists of a picture and a sentence and pressing the ‘talk’ button. The sentence is then spoken and the user can choose different languages to repeat the sentence depending on their location.



‘Talk for Me’ was developed by TalkToMe mobile phone shops founder Hugh McEvoy after his son, Karl, found speech was becoming more difficult following a childhood diagnosis of dystonia. Hugh said: ‘This degenerative illness has made it more difficult for Karl to speak and communicate his needs as he got older. I wanted to do something to help and spent a number of months developing the TalkforMe App.‘He uses it every day and there is huge potential for it to be used by other people who have difficulty with verbal communication. The cost of the  new App is only €4.99.

For more information, interview or App details, contact Hugh McEvoy at info@talkforme.ie  



For further information please see the following television interviews by clicking on the following links:


 

Date: Wednesday 15th September 2010 0039:00 +0100


 


Date: Thursday 16th September  2010 TV3 The Morning Show with Sybil and Martin 




Date: Monday 20th September 2010  RTE Four LIve :037:38


 







Tribute to the late Noel O’Reilly DVD for Sale €10 which shows Noel’s wonderful coaching style and impact on Irish football at all levels!


All proceeds in aid of Dystonia Ireland Medical Research Projects


Many of you are aware of the sudden death of FAI’s Senior Coach Educator Noel O’Reilly, September 2008 from a rare virus, Noel also suffered from a neurological movement disorder known as “Dystonia”. He was one of the most respected figures in Irish football. Noel had a distinguished coaching career at club and international level and he had become one of a select group of Irish coaches to receive a UEFA Pro-Licence.

At club level he was best known for his involvement with Dublin schoolboy club Belvedere and Eircom League of Ireland sides Shamrock Rovers and St. Patrick’s Athletic.


At international level he was the current manager of the Ireland’s World Universities Men’s team. He previously managed the Republic of Ireland Under-18 squad and was also coach to various other international underage teams over the years as well as being a member of Brian Kerr’s senior management team from 2003 to 2005.


The most beautiful story in Irish soccer is still – maybe always be – the story of Brian Kerr, Noel O’Reilly and their youth teams. They won two European titles within two months in 1998.


A year earlier, they brought Ireland to third place at the World Youth Cup finals in Malaysia.


Brian wrote about his friend Noel:


“Noel and myself worked together for over 25 years in coaching at all levels in Ireland and abroad. We were fortunate enough to have great success at St. Patrick’s Athletic, the Republic of Ireland youth teams and with the national team. We managed to travel the world together and I was like others privileged to share his company, wisdom and beautiful nature so closely for so long. Sometimes I say we worked travelled, laughed and enjoyed life together in a special way. Noel was a genius who loved life, football, people, music, books and words and he brought great joy, care and friendship to thousands of people. Like so many others I miss him hugely. We will never see his like again. R.I.P.”


For further information please contact:


Dystonia Ireland, 33 Larkfield Grove, Harold’s Cross, Dublin 6W.


Tel: (01) 4922514 Email: info@dystonia.ie Website: www.dystonia.ie