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NAI launch report on Rare Neurological Conditions to coincide with Rare Disease Day

NAI have launched the report of their half day conference in January on Rare Neurological Conditions to coincide with International Rare Diseases day today.

The conference on January 29th brought together the leads of both the rare disease and neurology clinical programmes together with other stakeholders to explore some of the challenges and potential solutions to improving understanding of and response to the needs of people with rare neurological conditions in Ireland.

The aim of the event was to inform the work of the NAI in relation to advocating for the needs of people with rare neurological conditions and the key learning for the umbrella is summarised in the foreword and conclusions of the report.The full report is available to download at http://www.nai.ie/go/resources/nai_documents/report-of-nai-conference-on-rare-neurological-conditions 

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


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.


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  


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














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