2. PRESS RELEASES

Press Release: October 6th, 2005, Dublin, Ireland European Conference for younger people with Parkinson's - first time being held in Ireland!

The EPDA (European Parkinson's Disease Association) Euroyapmeet conference being held in the Castleknock Hotel this weekend is for younger people with Parkinson's (one in ten is diagnosed before the age of 50), a European conference (but there are five delegates coming from Japan!), and on Friday there is a fundraising golf classic at Castleknock golf course, to help pay for the delegates who are being subsidised to help with costs. Speakers include world renowned neurosurgeon Steven Gill, Dr. Tim Lynch, neurologist in the Mater and Beaumont Hospitals, and topics will include Medications, Stem Cells - the Ethical Choice (Mr. GIll will be presenting on this),Relationships (Dominic McGinley, Ireland), Senses/Sexuality Gila Bronner, Israel) Pregnancy and PD (Dr. E. Mocanu, Ireland), and Tom Isaacs, who has PD, and who was 2004 UK Charity Personality of the Year, and is said to be an inspirational speaker. Mary Baker, MBE, the President of the EPDA, who along with the Parkinson's Association of Ireland and PALS, its branch for younger members, are hosting this event, is an eloquent speaker.

There is a second golf classic tomorrow, for Dr Lynch's Neurological Institute - by coincidence both are on the same day, this one in Hermitage. Dr Lynch is renovating 57 Eccles Street, for the purpose of increasing the number of clinics weekly.and as far as the patients are concerned, the most important aspect is that he will have a drop in centre where they can go for advice and information - currently here is nothing in place for this - with the exception of Limerick, where the Parkinson's Nurse Specialist, Mags Richardson, holds a drop in clinic once a month. We currently have three Parkinson's Nurse Specialists in employment in that capacity, some partly employed with the aid of private funding. The Neurological Alliance of Ireland has recently publicly stated its support for the appointment of disease specific nurse specialists - the PAI is a member of the NAI and heartily endorses its initiatives in regard to the improvement of patient services.

However, and possibly the most important point of all: An Tainiste and Minister for Health, Mary Harney, is closing the conference at 12 30 on Sunday, and she is signing the Parkinson's Patient Charter - the Global Declaration on Parkinson's, which endorses a patient’s basic rights, such as the right to a proper diagnosis. appropriate treatment by an appropriate specialist, timely treatment, and more - I have attached the document.

This is an important act by Mary Harney, quite courageous, aspirational, and hopefully a declaration of intent. Tony Blair supports it, as does Michael J Fox, Muhammad Ali was the first to sign, and was followed by a host of other celebrities, heads of government and health ministers.

Parkinson's - people with Parkinson's, it is said, go home, close their doors and become shadows. And what would change that would be some publicity on prime time TV - if people can see someone with PD and say it is only PD - we want the public to know about it so that the subtle discrimination, based on ignorance of Parkinson’s, can end.

Ann Keilthy
PRO
Parkinson's Association of Ireland, and
Hon Sec of PALS, (branch for younger people)
Mobile 0872853117
Members of the National Executive Committee will be available for interview, as will many of the speakers.

Attachments:
Global Declaration
Conference Programme
Mary Baker Biography

REPORTED ON: RTE 1 6.01 News Sunday 4th, TV3 5pm News, Sunday; RTE Radio 1pm Sunday "This Week" with Paul Maguire.

PRESS RELEASES

September 9, 2005

The Neurological Alliance of Ireland's website was formally launched today, with news reports centering around the speeches made during the event, in particular the agreement amongst the speakers of the need for up to 39 neurologists, along with what the NAI's Chairperson Audrey Craven described as "disease-specific nurse specialists". She made t he point that around each specialist there should be a multidisciplinary team. In response, Mary Harney, Minister for Health, acknowledged that there was validity in the points made, and referred specifically to a submission delivered to her by the NAI in May, concerning nurse specialists, saying that she would like to move it forward.

If this were to happen, progress would begin to be made. In an interview for RTE News, Ann Keilthy of the PAI made the point that it was a patient's quality of life that was at most risk when dealing with a progressive neurological condition, and that the support services that would help maximise quality of life were at worst non existent and at best, patchy and disorganised.

April 8, 2005

Today our Pope is being buried. Today, Parkinson's affects about 6,000 in Ireland. Today many of those will spend hours at public clinics, seeing a neurologist or a registrar, often for five minutes. Today some few will go home without seeing anyone. Today will become tomorrow or next week and they may attend once again, possibly for hours.

Our Pope was, for many of us, the representative of Christ on earth, and for many of us with Parkinson's, our footprints disappeared and he carried us. We saw his battle - ours is the same; we saw how he never let go, how he continued to perform his duties until long after anyone thought he could could, and we were inspired.

On this sad day for all Catholics, we would wish for those with health problems, the same understanding that the public accorded our Pontiff. He never walked in the shade; would that we could do the same.

Parkinson's produces symptoms that make us stand out; it robs us of the ability to move, to show emotion; if you look stupid you must be stupid; if you shake or stagger when you walk you must be drunk.

Our health system sees to it that many of us never see a specialist; many of us know very little about this condition that is gradually controlling our lives. Those of us who work with the Parkinson's Association hear about lack of respite care, about carer burnout, about the side effects of some of the drugs, about depression. Those of us who do this work and who also have Parkinson's are doubly affected; in the phone calls we receive we can see our future too. We hear about the Parkinson's nurse specialists and how they transform lives and improve quality of life, and we hear about how difficult it is to finance their jobs, and we wonder why the Health Boards don't all see the advantages of having more, many more than the current three in Ireland. We wonder why the surgery that offers hope of a more normal life for some of us is not offered in Ireland; we wonder at the 200,000 euro that would make it possible and why it is not offered.

Our role model is being buried today - as we watched his struggle, it became ours too. Please don't bury our hopes and aspirations; help us make Parkinson's "pas-remarkable" and help us to be able to live with dignity. Let that be one legacy of this good man, of our Pope, John Paul II. And may he rest in peace.

3. REPORTS IN THE MEDIA

April 4, 2005

The Parkinson's Association of Ireland have praised Pope John Paul II for highlighting the battle against the disease.

"Those of us who have Parkinson's are well aware of the supreme effort he has made in these last few days to communicate with those in St. Peter's Square, and all would admire him for his courage in dealing with the constraints this neurological condition imposed on him, a courage in keeping with the determination and dedication he brought to his life's work," said a statement from the Association.

"Sadly, many with Parkinson's shun the limelight because of people's reactions to their symptoms.



"Hopefully however, the publicity surrounding his condition may help to increase knowledge of Parkinson's amongst the general public, and therefore a greater acceptance of Parkinson's."

REPORTED ON: iol.ie Breaking News; Eircom.net breaking news; Irish Examiner, hard copy and online.

October 29, 2004
Orion Pharma - Brenda Lattimore and Paul Clinch - received the commended prize in their category at this prestigious event - they were nominated by the Parkinson's Association

Irish Medical Times