Patient & Family Meeting 2015 Programme

29 April 2015

The 2015 Patient and Family meeting takes place in the Gresham Hotel, Dublin on Saturday May 9th 2015. Download the programme here to see the expert speakers presenting and the workshop sessions that have been organised for the Pulmonary Hypertension patients and their family and friends. There is no charge for attending the meeting however registration is essential.

Leinster Group Meeting for PH Patients and Families

16 April 2015

The first meeting of this group was held on Wednesday 15 April at 7.30 pm.  There was great enthusiasm to get a regular support group up and running.  The next meeting is scheduled for 27th May 7.30 pm in the Red Cow Inn.

Further information from: Regina Prenderville, Tel: 01 854 5172 or 087 637 6563 : Alternately email us at  pha@mater.ie

Upcoming Events

10 April 2015

Patient and Family Meeting 2015

This year’s meeting will be held in the Gresham Hotel, O Connell St., Dublin on Saturday, 9 May at 10.00 am – Registration is from 9.30 am.  We have reserved the O’Connell and the Trinity Suites for our meeting.  The area is spacious with easy access to bathroom facilities etc.  The hotel has a car park and the delegate rate for the day is €5.00  Access to the carpark is a little complicated and involves a bit of walking, so some may prefer to be dropped off at the door.  When the programme is  sent an outline of how to gain access to the carpark will be included.

Leinster Meeting – 15 April 2015

In an effort to encourage regular meetings between our members, you may recall we organised meetings in Cork and Mullingar last year.  We are holding a meeting in the Red Cow Moran Hotel on Wednesday 15 April at 7.30 pm and all are welcome to attend.  The Hibernian Suite has been reserved, which is at the back of the hotel in the Business Centre.  Parking facilities adjacent to the Business Centre are good.  To provide an idea of numbers we would appreciate those hoping to attend to contact us on 01 854 5172 or 087 637 6563.

World PH Day – 05 May 2015

World PH Day will be held this year on Tuesday 5 May.  Patient groups around the world are organising events to mark this date.  Riverdance will launch their Dublin show in May and have agreed to do the launch on 5 May while wearing our Get Breathless for PH  T-shirts.  The venue has not been decided yet, but I will inform you when I send the programme for the above meeting

As always I would value your comments on how we can encourage more communication between our members and how I can help you to achieve this.
Regina Prendeville
Pulmonary Hypertension Association Ireland

All Ireland Pulmonary Hypertension Meeting 2015 – Register

23 January 2015

The All Ireland Pulmonary Hypertension meeting 2015 for medical professionals will take place in Belfast on Friday 27th February 2015 at the Hilton Hotel Belfast. Hosted by Prof. Sean Gaine, Consultant Respiratory Physician,  Mater Misericordiae University Hospital and Dr Carol Wilson, Consultant Cardiologist, Belfast Health & Social Care Trust, the event includes presentations from 6 leading expert guest speakers from Pulmonary Hypertension and related disciplines. The full programme for the day can be downloaded at this link.

For those who wish to submit abstracts the correct application form can be downloaded and submissions made at this link.

To register for the event please fill in your details in the online form below.

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Registrations will be acknowledged within 48 hours of receipt. Should you not receive an acknowledgement of your registration or require any further information please contact  Regina Prenderville – Tel: +353 -1 -854 -5172 or +353-87-637-6563 email: pha@mater.ie

All Ireland Pulmonary Hypertension Meeting 2015 – Abstracts

16 December 2014

The All Ireland Pulmonary Hypertension day taking place on Friday the 27th February 2015 in Belfast (details in image above)  includes a trainee award for best presentation. To that end we are calling for abstracts and you can   download the document here for the correct template. Please ensure that you fill in all the details in the template and you can submit it via the webform below or by emailing it directly to pha@mater.ie. The closing dates for submissions is Wednesday 18th February 2015 and you will receive an acknowledgment of your submission within 7 days of sending it. If for any reason you do not receive an acknowledgement please contact us at pha@mater.ie or by calling Regina Prenderville, Tel: 00 353 1 854 5172 or 00 353 87 637 6563.

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A date for your Diary – All Ireland Pulmonary Hypertension Meeting 2015

27 November 2014

As you can see from the flyer above our 2015 All Ireland Pulmonary Hypertension meeting will be taking place on Friday 27th February 2015 in Belfast. In the first instance we are calling for abstracts and a form will be available on the 15th December onwards for download from this website for those wishing to make a submission. There will be a Trainee Award for best presentation.

Further information from: Regina Prenderville, Tel: 00 353 1 854 5172 or 00 353 87 637 6563 : Alternately email us pha@mater.ie

Daniel’s life with Pulmonary Hypertension

11 November 2014

We received the following message  from our colleagues Iveta & Peter in Slovakia. We think you might find the video interesting and inspiring.

I am proud to let you know that the movie “Daniel’s life with PH”, which we recorded last year, won another award. First part of the movie called “Lungs, which do not work” won first place in documentary cathegory in international movie competition CIMES 2013 in Baden-Baden. In October this year, the author of the film participated in the competition CIMES 2014 with other 2 parts of the movie separately and won first 2 places in the same cathegory.
2. part of the movie – Daniel’s new lungs – 1st place
3. part of the movie – Chance for a new beginning – 2nd place
Premiere of this movie was on a professional PH workshop dedicated to WPHD in April 2014. The movie is available on Youtube with English subtitles.  It is a testimony of the patient’s life with PAH and after lung transplantation

Warm Greetings from Slovakia

Kissing Chain Videos

02 November 2014

You’ve seen the pictures, read the press coverage now it’s time to see the videos! We narrowly missed our record attempt but the presence of (Irish Deputy Prime-minister) Tánaiste Joan Burton with Professor Sean Gaine of the National Pulmonary Hypertension Unit brought some great press coverage and interviews with the media. Watch Prof. Gaine give an explanation of Pulmonary Hypertension and its impact on sufferers. Ms. Burton’s support for the awareness campaign is well expressed as she explains how attending the event has contributed to her own education about PH. (Click on the preview below to view and if no preview is visible see the video on YouTube at this link)

And of course the day itself was all about the patients and their supporters who attended the event to show their support. If you participated you might well catch a glimpse of your very own ‘kissing action’ and if you weren’t able to attend you can certainly pick up the fun atmosphere of the event and some excellent overviews from the drone camera. Yes, we certainly brought some high tech to Pulmonary Hypertension awareness that day while we tried to explain the plight of PH sufferers ‘when all they need is the air that they breathe’! We hope you enjoy your viewing. (Click on the preview below to view and if no preview is visible see the video on YouTube at this link)

Read All About It – Kissing Chain Record Attempt makes the Press

19 October 2014

One of our main aims for the Kissing Chain Record attempt was to attract as much publicity and media coverage as possible to promote Pulmonary Hypertension awareness. The great turnout from our patients, their families and supporters and many other willing volunteers bolstered by the presence of (Irish Deputy Prime minister) Tánaiste Joan Burton meant a healthy attendance by the National and Local Press. Follow these links to see articles on the Irish Times  and Herald websites that appeared in those publications.

‘Sealed with a kiss’ helped us hit the headlines in the Irish Examiner and the local press in the Dublin 15 area captured the fun atmosphere for their readers with their nicely titled ‘Locking lips for a good cause’.

We’d like to thank everybody for their support and also for being (we think you’ll agree) so very photogenic in support of  such a good cause!

Copenhagen Ironman 2014

10 September 2014

It takes an Iron Will to deal with Pulmonary Hypertension so there was no more fitting collaboration than PH Europe and the August Copenhagen 2014 Ironman event to raise awareness of Pulmonary Hypertension and educate the public on how everyday with Pulmonary Hypertension is like an Ironman challenge for PH patients. Download this article by Regina Prendeville that tells the story of the event, the imaginative way PH awareness was woven into the day and a truly inspiring story of two of the partcipants.

Tour d’Irlande East – an experience to remember!

12 August 2014

Saturday 24 May was a damp, dull morning  – but the spirits of our brave cyclists were not dampened by such trivialities as the weather.   These guys were on a mission – to visit their colleagues in the new Ireland East Hospital Group while raising much needed funds to complete the 3^rd Catheterisation Laboratory in the Mater Hospital.  The hospitals in the new group are:  Mater University Hospital, St Vincent’s University Hospital, National Maternity Hospital, St Michael’s Dun Laoghaire, St Colmcilles Hospital, Loughlinstown, Royal Victoria Eye & Ear Hospital,  Wexford General Hospital, St Lukes Hospital Kilkenny, Midlands Regional Hospital Mullingar, Our Lady’s Hospital, Navan&Cappagh Orthopaedic Hospital.

I arrived early to the meeting point at the Centre for Lung Health where we had stored the specially commissioned cycling jerseys, first aid equipment (which thankfully wasn’t needed), bottles of water, bars, bananas etc.  Consultant staff  & friends from the Mater University Hospital, Mater Private Hospital & Galway Regional Hospital arrived to collect their packs.  We also had staff from the Catering & Maintenance Dept in the Mater Private Hospital join the group as did 3 members of staff from Daiichi Sankyo.   When all cyclists were togged out, armed with sufficient supplies to keep them going till our first stop – it was time to pose for photographs outside the main hospital steps on Eccles Street.  We were delighted to see the Sisters of Mercy had come out in force to see us off and somehow, we knew their prayers would keep us safe.  A Garda escort brought us across town as far as the National Maternity Hospital, Holles St.

Along the way we stopped at the hospitals in our group and took photos for posterity.  When we got  onto the R741 – the boys started to gather speed, I thought to myself – these guys are really moving and shuddered to think that in a moment of lunacy I had considered joining them  on one of the stages myself!!  It probably sounds quite naïve but I felt a huge sense of pride when I saw the pelathon speeding along the way in the fab blue jerseys we had designed for the occasion.

Stage 1 was a long journey – 150 km.  Our first stop was a quickie in Gorey  for sustenance, ablution etc then back on the saddle and on to Wexford General Hospital where we met with Dr Colm Quigley, Clinical Director & colleagues.  We are most grateful to all who took the time to come to meet us on a sunny, Saturday evening.

Next morning  (Sunday) we set off around 11 am to Kilkenny.  Arrived at our hotel around 3 pm having stopped along the way in the Old Schoolhouse Café for refreshments.  This café was originally built in 1703 as a Merchant’s House along the banks of the River Nore.  The scenery was breath-taking and the home baking was just what our team needed to bring them to their destination. The team was glad to have a few hours of rest and peace in Kilkenny.

At 9.00 am on Monday morning Prof Gaine & Prof Sugrue met with Dr Garry Courtney and his colleagues in St Luke’s Hospital, Kilkenny  for Grand Rounds.  Roads from Kilkenny to Mullingar were narrow and more difficult for traffic to pass etc. so the cyclists had to spread out in single file to avoid traffic build up. This was a really busy day as the consultants were scheduled to make a presentation to the Midland Clinical Society  at 7.00 pm in Mullingar that evening.   This was facilitated by Dr Mark Sheehy, Consultant Respiratory Physician,  Midlands Regional Hospital, Mullingar.  We were very pleased to have an audience of over 40 general practitioners and hospital consultants.

Tuesday, 27 May was our last morning and we set off in beautiful sunshine (incidentally the rest of the country were experiencing downpours in certain pockets – but thankfully we avoided all of them over the four days).  We set off for Our Lady’s Hospital,  Navan where we were met by Dr Billy Bourke, Clinical Director & Ms Margaret Swords, Group CEO.   There we had a round table discussion followed by lunch.  At around 3 pm we left Navan and headed back to the Mater and received an enthusiastic welcome from our colleagues.  A mini symposium entitled Innovations in Cardiovascular& Respiratory Medicine was held in the Fintan Gunne Lecture Theatre.

The aim of the cycle was to raise funds for a third Catheterisation Laboratory in the Mater Hospital and also to meet with our new colleagues in the Ireland East Hospital Group.  We are happy to say that we were successful in achieving both our aims and are indebted to the members of the Pulmonary Hypertension Association who donated €15,000 towards the development. In total we raised over €80,000 for completion of the Catheterisation Laborary.  We are very happy to inform you the Cathlab is now open and fully operational within the Mater Hospital.

On reflection of the event, it was an extremely enjoyable experience and thankfully we had no mishaps.  There was one person who ensured that everything went to plan and that was Declan Traynor.  Declan drove the support van (which was kindly lent to us by Silverdome Electric) The contents of the van were capable of caring for all eventualities – even though, the only mishaps (if we could call them that) were two punctures, which were repaired with a speed & efficiency which would impress Vincenzo Nibali himself !

It is important that we should also acknowledge the generous support received from the following companies:  Actelion, Astra Zeneca, Bayer,Boehringer Ingelheim, Daiichi Sankyo, Edwards Life Sciences, Mater Private Hospital, Menerini,  Novartis, Sword Medical.

Will we make this an annual event – just for the fun of it ……… watch this space !

If you’d like to see more images from the event please visit an album of photos on our flickr page at this link.

Regina Prenderville

Project Manager

Pulmonary Hypertension Association

PHA Europe Summer Newsletter

11 August 2014

PHA Europe have published their Summer 2014 Mariposa Journal and you can download a copy of it here to see the activities of PH organisations across Europe.

Kissing our way into the Record Books

31 July 2014

Pulmonary Hypertension Awareness Day – 28 September 2014 at 1.00 pm

Guinness World Records have accepted our challenge to break the Longest Kissing Chain – (current record is 351).  We have been trying to organise this event for some weeks and had hoped to do this as part of World PH Day events on 5 May 2014, however we found it difficult to get a venue.  Instead of calling the event World PH Day, we have named it Pulmonary Hypertension Awareness Day (Ireland)

We are indebted to St Brigids GAA Club on the Navan Rd., Dublin 15 who have kindly agreed to allow us use their grounds for this event and have offered to help us with the logistics of the day.

There are a considerable number of guidelines which we must follow in order to verify our attempt to break the world record – e.g., video footage, high quality colour photographs, independent witness statements or one signed affidavit by a civil law notary etc etc.   However the guidelines which we will ask our participants to adhere to are as follows:

• The line must stay connected and in place until the record is completed
• All participants must be lined up one after the other
• All participants must kiss each other on the cheek, give and receive two kisses each
• The attempt must take place at a single location and be in a restricted area

As an eye catching way to grab people’s attention, we will use the idea used by PHA UK some years ago by giving everybody a blue lipstick.  We are confident we can break the record of 351 participants so now is the time to start gathering your family and friends to help us create the longest kissing chain in the world.

We would be delighted to have any sports stars, members of the entertainment world, media personnel etc participating in the event.  So please encourage your ‘famous friends’ to join us on Sunday, 28 September at 1pm in St Brigids GAA Club.

The main aim of this event is to raise the profile of our organisation while raising awareness for Pulmonary Hypertension.

We have already received huge interest in this Guinness World Record attempt.  However we must stress that it is essential that everybody should register before turning up on the day.  We will allocate T Shirts for all those who take part.  You may register by contacting  Regina Prenderville at pha@mater.ie  or  087 637 6563.

Tour d’Irlande East

21 May 2014

Irish medical consultants take “maters” into their own hands and hit the road to raise funds for urgently needed hospital equipment.

“On your bike! Let’s do ‘rounds; in our new Ireland East Hospital group!’.

A new Cath Laboratory is urgently needed say the Heart and Lung teams at the Mater Hospital. So they are taking to the road from the 24^th to the 27^th of May, cycling 500km over four days, in order to raise funds for the urgently needed Cath Laboratory, which will transform the life of patients with heart disease and especially those suffering from Pulmonary Hypertension.

Professor Declan Sugrue, cycle leader said “Our aim is to raise €100k for the third urgently needed Cath Laboratory at the Mater. “We are currently seeing over 6,000 patients each year so therefore having another lab will mean improved access and a better service to our patients”.

While doctors are known to bring their team on ward rounds, Professor Declan Sugrue and Professor Sean Gaine have come together in this novel ‘exercise’ to  do a 500km ‘round’  with their team  to visit all hospitals in the recently designated Ireland East Hospital Group.

The team plans to cycle to all eleven hospitals in the new group and link up with colleagues conducting a number of clinical networking sessions including a presentation to the Midlands Clinical Group (GPs) in Mullingar on various medical topics including the cardiovascular and respiratory effects of exercise, new developments in thrombosis and an update on pulmonary hypertension.

The special support team behind the cycle include a number of sponsors with   the Mater Foundation being a key partner in the overall organisation along with Regina Prenderville on behalf of the Pulmonary Hypertension Association who enthusiastically welcomes the increased diagnostic facilities at the Mater for patients nationwide.

Members of the public are invited to look out for them on the way as all support is welcomed. To sponsor the team or any of the core group of five cyclists who include Prof’s Declan Sugrue and Sean Gaine along with Emmet Reilly and Eddie Mongey (Mater Private) and Colm Moynihan  (Sword Medical), Please donate at www.materfoundation.ie

The Four Stages of the event are:

The cycling route covers a distance of 500 km and is divided into four stages. Stage 1 May 24^th, Dublin to Wexford General Hospital, Stage 2 May 25th: Wexford to St Lukes Hospital in Kilkenny, Stage 3 May 26th: Kilkenny to the Midlands Regional Hospital in Mulligar. Stage 4: May 27^th Mullingar to Dublin with stops at Navan and Cappagh hospitals

Patient & Family Meeting 2014

15 May 2014

The Pulmonary Hypertension Association’s Annual Patient and Carer Meeting for 2014 was held in the Gibson Hotel on Saturday the 10th May. As the photographs below testify the event was very well supported and considered very successful by all those attending. The programme for the day involved presentations by Ms. Regina Prenderville of PHA Ireland, Professor Sean Gaine, Head of the National Pulmonary Hypertension Unit, Dr Kevin Walsh, Consultant Cardiologist, Dr Cormac Farrelly, Consultant Radiologist, Mr Diarmuid Semple, Pharmacist and Ms Sonia Morrisson of Baywater Healthcare. Full details of the wide ranging agenda can be found here.

Time to Talk

15 May 2014

PHA Europe have updated their website to make the findings from the Patient and Carer survey (conducted at the end of 2011 across five European countries) more accessible to members and created a new “Time to Talk” section to host a range of upcoming materials to support PHA Europe members and patients and carers. By following this link or clicking on the image below you will be  provided  with an update on new translated content available for download and a reminder of some of the recent and planned changes to the PHA Europe website.

2014 Patient and Family Meeting Programme

09 May 2014

The 2014 annual Patient and Family Meeting will take place on the 10th May at the Gibson Hotel, Point Village, Dublin. Download the programme for the day here.

Support Group Meetings

02 April 2014

We wish to encourage the development of support groups around the country.  However to ensure the success of this, we need the help of those who have a connection or interest in Pulmonary Hypertension.

Through the Pulmonary Hypertension Association – Ireland, we would be very happy to offer any organisational assistance that may be necessary to progress your ideas.  If you would like to become involved in setting up or joining a support group – please email me at pha@mater.ie

The following dates and venues have been organised :

Wednesday 2 April, 2014:    Short lecture entitled ‘Nutrition & Well Being’ will be presented by Ms Corina Glennon-Slattery, Community Dietician Manager, St Loman’s Hospital, Mullingar.  This will be held in the Mullingar Park Hotel at 7.00 pm.  We hope PH patients, their families and friends may be able to attend this meeting.  Following the presentation, we will discuss the feasibility of setting up a ‘Midlands PH Support Group’

Thursday 9 April, 2014:  Presentation entitled ‘Social Support for Patients & Families’ will be given by Dr Mary Rose Day, University College Cork in the Vienna Woods Hotel, Glanmire, Co Cork at 7 pm.  After the talk we will have time to discuss setting up a ‘Southern Branch of our Support Group Network’

We hope to organise similar meetings in Galway and Cavan later in the year.

Regina Prenderville

PHA Ireland Spring 2014 Newsletter

21 March 2014

The 2014 Pulmonary Hypertension Association Ireland Newsletter has just been published. Full of informative content it covers areas such as Medical Updates, the work of the Clinical Nurse Specialists, Research & Clinical trials, the 2013 Get Breathless for PH campaign and other PHA Ireland related material. We hope you enjoy it and find it informative. To download a copy click on the image below:

2014 Patient and Family Members Annual Meeting

09 January 2014

The annual meeting for patients & family members will be held in the Gibson Hotel, Point Village, Dublin on Saturday 10th May 2014.  The programme and further information will be circulated to members shortly.