May 5th 2015 was World PH Day and the world renowned dance troupe Riverdance stepped forward to support our Pulmonary Hypertension awareness campaign.
At the event for the media, Regina Prendeville, Project Manager PHA Ireland, commented “It is a dreadful devastating disease and we are trying to raise awareness of this. Our theme is get breathless for PH and we’re asking able bodied people to get breathless for pulmonary hypertension because people with this disorder are breathless all the time. We all know that Riverdance get very breathless throughout the course of their show and they have done that here today by posing for the media which we hope will raise awareness for this terrible disease”. See more images of the event at this link.
Tánaiste Joan Burton (Irish Deputy Prime minister) was among several hundred people who gave their time to support the Pulmonary Hypertension Awareness day on Sunday September 28th along with patients, their families and supporters and many more who came to lend a hand to make it a day to remember. Unfortunately we narrowly missed beating the world record for the longest kissing chain but our disappointment was quickly mitigated by the atmosphere and enthusiasm of those who participated. Just as the chain was forming there were a few drops of rain but the sunshine atmosphere of the crowd dispersed that rapidly. People power was to the fore as you can clearly see from this spectacular overhead view!
We’d like to thank everybody who gave of their time and those who couldn’t attend but supported from afar by spreading the word about the event. Our sincere thanks to St. Brigid’s GAA club for the use of their facilities and support on the day.
Pictured is Tánaiste Joan Burton as she is kissed by her husband Pat Carroll at the kissing chain event. We’ll be sharing many more images of the event but for now visit our Flickr Page to see the first images released that give a great feel for the fun event it was.
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 24th to the 27th 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”. Read more here.
The 2014 annual Patient and Family Meeting took place on the 10th May at the Gibson Hotel, Point Village, Dublin. Download the programme for the day here. We were delighted by the support from the large number of delegates that attended and the feedback we have received was that the event was a very valuable and informative experience for the attendees. Follow this link to see photos of the presenters and delegates who were present.
In the 2014 PHA Ireland Newsletter Prof. Sean Gaine, Head of the National Pulmonary Hypertension Unit writes about both the achievements of 2013 and what 2014 has in store for Pulmonary Hypertension Ireland. Read a short extract of his article here or download the full newsletter at the link beneath the extract.
Prof Gaine writes: The year started with the World Symposium on Pulmonary Arterial Hypertension in Nice, France in February 2013. At the World Symposium the classification of the different types of Pulmonary Hypertension was updated and a new treatment algorithm was proposed. Also new targets were suggested for scientific research to develop treatments for the future. The final report from the meeting was published in December and will be the roadmap for the next 5 years. Furthermore 2013 saw two new drugs approved for treatment. While these drugs are not yet available they are going through the approval process and should be in use in 2014.
There were important developments in Pulmonary Hypertension in Ireland during 2013…… read the full article by downloading it here
Last year saw a series of events to support the Get Breathless for Pulmonary Hypertension campaign and World PH Day which occurred on May 5th last year and was marked by Pulmonary Hypertension organisations and their supporters across the world. We are very grateful to our stars of the sports world (Irish Ladies Grand Slam winning team) and the Arts (members of the Riverdance dance troupe) and our many dedicated volunteers and supporters who undertook events to show support for our 2013 campaign and raise much needed funds. We thank all for their generosity in both time and contributions. Take a look down this page and at the PH News and Updates (left hand column) to see the efforts people have put in to make Get Breathless for Pulmonary Hypertension our most successful campaign so far!
Leo Houlihan and his team took part in the Templenoe Regatta, Valentia Island and in stunning surroundings came first in the Seine boat race. Wearing our T-shirts they stand proud and strong as they prepare to train for the event. Read more here.
Susan Ginnety Sheridan, Zara Curtis, Maeve O’ Donnell, Catherine Collins and Catherine O’Brien of Riverdance took time out from a very important weekend for Maeve to show their support for the ‘Get Breathless for PH’ campaign. Read more about their support here.
Our sincere thanks to Ailis Egan, Nora Stapleton, Fiona Coghlan, Shannon Houston and Jenny Murphy, members of the Irish Ladies Rugby Team Champions (winners of the Grand Slam & 6 Nations Championship) who were happy to get breathless when they launched the ‘Get Breathless for Pulmonary Hypertension’ campaign at the Old Wesley training grounds.
The ladies are wearing and displaying the ‘Get Breathless for Pulmonary Hypertension’ T-shirt, illustrating the theme design for World PH day and the overall campaign.
Read more here about the “Get Breathless for PH” campaign, World PH Day 5th May and how you can access t-shirts, sponsorship cards and posters for any event you may wish to organise to support the campaign.
The 2013 PH Symposium took place at the Grand Hotel, Malahide on Saturday the 27th April. See the details of the programme for the event here. Nearly 100 delegates from all over Ireland attended to make for a very successful event. Read an article describing the day’s proceedings here detailing the presentations and the Q and A sessions with the speakers and delegates.
Watch the short video below to understand how the symptoms of Pulmonary Hypertension are often mistaken for more common diseases and how important early diagnosis is.