Slovenia – World PH Day 2016

13 June 2016

The following video shows the activities undertaken by our colleagues in Slovenia to raise awareness of Pulmonary Hypertension. As well as some very informative content it demonstrates a 6 minute walk test they devised to show non PH sufferers the burdens and challenges that Pulmonary Hypertension patients endure on a daily basis.

PHenomenal Faces behind PH

03 June 2016

We have received the following information from PH Europe about a very interesting project originating from PHA America. We will provide further information about the social media campaign as it becomes available later in the year.

SteadyMed Therapeutics and the Pulmonary Hypertension Association (America)  are partnering together to showcase the brave and dynamic women and men who deal with pulmonary hypertension (PH) on a daily basis through the Phenomenal Campaign.

Renowned photographer Michael Soo, whose collection of fine art and commercial photography has been featured on numerous international magazine covers and in newspapers like the New York Times, is donating his services to shoot empowering portraits of the PHenomenal faces behind PH. These remarkable individuals include mothers and fathers, professionals, musicians, and athletes, all of whom refuse to let PH control their lives.

We will be premiering these beautiful photos gallery exhibition during the PH Association conference this year, and they will also an essential part of a broader social media campaign set to launch later this year and designed to honor the phenomenal people who struggle with PH.

As part of the social media campaign, we will be asking people in the PH community to take selfies through out the year that demonstrate to the world that they are continuing to live life to the fullest in spite of dealing with a life threatening disease. They will then tag the PHenomenal Campaign on their social media vehicle, which will allow all who participate to share their experiences with each other.

At the end of the year, we will bring together all of the photos (both professional portraits and selfies) that have been taken and compile them in to book for purchase, with all proceeds going to the PH Association.

Look How Far We Have Come

12 May 2016

Professor Sean Gaine and many other experts across the world have contributed to this video, developed by Actelion, charting how far understanding, treatment and support  of Pulmonary Hypertension and PH patients has come since the early 1990’s. A lot done and a lot to be proud of, a lot more to do. This fabulous video is well worth a view.

The Sun Shines on PH Awareness 2016

09 May 2016

The weather provided the perfect support to our Viking Splash Tour of Dublin to raise awareness of Pulmonary Hypertension for World PH Day 2016. PH awareness was the clear winner when we got off to a great start by being seen off by 4 winners! Cian O’ Sullivan, Jonny Cooper, John Small and Michael Fitzsimons of the All Ireland and National Football League winning Senior Dublin GAA squad arrived to see us off and we are very grateful for their time and efforts in raising the profile of Pulmonary Hypertension Awareness. We also want to extend our gratitude to Dublin West TD Jack Chambers for his generous support on the day.

We think the following photographs attest to what this support, Dublin on a sunny day and a band of high spirited and dedicated supporters can achieve in the cause of raising awareness of Pulmonary Hypertension and its devastating impact on lives. A huge thank you to all who took part.

You can also visit our Facebook Page to see many more images of the Tour and other activities in Ireland for PH Day 2016.

The Dubs support PH Awareness for World PH Day

01 May 2016

Great attendance at 2016 Patient Conference

18 April 2016

Thanks to all who attended the annual Pulmonary Hypertension meeting for patients & family members at the Crowne Plaza Hotel Dublin on Saturday 16th April. The attendance of 107 was the best we’ve ever had. Great indication of the positive growth of our organisation. A very sincere thank you to the speakers, workshop facilitators and sponsors.

2016 Patient Meeting Programme

04 April 2016

The 2016 Patient Meeting is taking place on Saturday 16th April, 2016 at the  Crowne Plaza Hotel, Blanchardstown, Dublin 15. We already have many PHA Ireland patients and family members signing up to attend what promises to be a highly informative and interactive day with a fabulous range of expert speakers. We highly recommend you attend and the full programme is detailed above. You can download a copy of it here including a reply form to enable you to register. In the case of any queries you can email to pha@mater.ie or contact Regina Prenderville on 01 854 5172 or 087 637 6563.

Race Night

07 March 2016

A race night is being organised by one of our members Sally-Ann Breen and her husband Martin on Thursday March 10th in St Mary’s Rugby Club, Templeogue at  7.45 pm. They have secured sponsorship from Paddy Power for the night and all are welcome to attend and do bring your PH T shirt along (if you have one) so that we can get lots of images as you gamble with a clear conscience for a great cause. We’re betting on PH awareness being the clear winner that night.

2016 Patient / Family Meeting

29 February 2016

A date for your diary: The 2016 Patient / family meeting will be held on Saturday, 16 April 2016 in Crowne Plaza Hotel, Blanchardstown. The day’s programme will be advised soon.

Inaugural Midlands Support Group Meeting

29 February 2016

PHA ireland is having its first Midlands Support Group meeting in Mullingar on 7 March in Bloomfield House Hotel at 11 am. We’re looking forward to seeing all those who can attend.

Collie’s Chop for Charity

12 February 2016

Kathleen Darker’s son Colin, together with his girlfriend, Avril Burbridge organised a fundraiser for Pulmonary Hypertension on Saturday, 6 February in Slattery’s in Rathmines. The event – aptly named ‘Collies Chop for Charity’ was an outstanding success.  Colin had long, waist length, raven dreadlocks and prior to the night, family members, friends, neighbours and colleagues  most generously sponsored the ‘chop’.  Before a scissors had touched the mane – a sum of over €2000 was raised.   A further €2,000 was raised on the night through further sponsorship and donations.  Well done to all concerned.  At this moment – we are seeking knitters to make a hat for Collie who must be feeling the cold having endured the chop for PH.  We are very grateful to all concerned.

Patient Support Group Meetings

07 December 2015

A private room has been reserved in the Hibernian Suite of the Business Centre of the Red Cow Moran Hotel for the following dates:

9 December, 2015
20 January 2016
17 February 2016
16 March 2016

All meeting will be held on Wednesdays at 11 am
Patients & family members/ friends welcome to attend

Introducing the PH Library

15 November 2015

The website  www.ourphlibrary.com has been developed by leading patient associations PHA Europe and PHA US, to provide information and a library of high quality resources developed by patient groups for anyone who has been diagnosed with Pulmonary Arterial Hypertension (PAH) as well as their families and carers. It also aims to provide an index of useful materials for patient organizations from around the world.

The website is divided into three modules (About PH and PAH, Research and Treatments, and Support), to help you learn more about living with and managing your condition. Each module contains sections that can be expanded or collapsed, allowing you to access the amount of information you want and at a pace that is right for you.

Patient Support Group Meeting 12th November 2015

09 November 2015

The next patient support group meeting will be held on Thursday 12 November at 7 pm in the Faith Centre on St Alphonsus Road. This is in the grounds of the Monastery – you will see the high walls and a sign for the Ruah Retreat Centre on the gate. This venue is very close to Iona Road Church. You may drive in and park. The Faith Centre is a stand alone building. We hope you can make it and look forward to seeing you.

Further information from Regina – 087 637 67563

Knightsbrook Health Club Fundraiser

06 October 2015

The Staff at Knightsbrook Health Club, Trim recently held a fundraiser for the Irish Cancer Society and the Pulmonary Hypertension Unit in the Mater Hospital Dublin raising €1230 which was divided equally between both charities.

Pictured from left are staff members: Teresa Melia, Brian Lennon, Chloe Duignan, Philip Dorian, Ania Filipiak and Grace Dennison.

Prof Sean Gaine receives international award

01 July 2015

In June this year Prof Sean Gaine, consultant Respiratory Physician travelled to the United States to receive the Samuel P. Asper Award for Achievement in Advancing International Medical Education from the Johns Hopkins Medical and Surgical Association. The award was presented by Dr Paul Rothman the Dean of the Johns Hopkins School of Medicine and CEO of Johns Hopkins Medicine. The presentation cited Prof Gaine’s establishment of the National Pulmonary Hypertension Unit at the Mater Misericordiae University Hospital.

The Asper Award was established in honour of the vision of the late Samuel P. Asper, M.D. ’40. A renowned Hopkins educator and physician, he served as Dean of the American University of Beirut School of Medicine in the mid-to-late 1970s. Dr. Asper believed that the Hopkins-trained physicians who are dedicated to fostering excellent medical care and education in a foreign country are continuing the outreach effort of Dr. William Osler, who travelled to China to assist in establishing Peking Medical Union College, and deserve recognition for their efforts. The Asper Award is presented once every two years during the Biennial Meeting of The Johns Hopkins Medical & Surgical Association to a member of the Association who has had a significant impact on the health and education of those in foreign countries.

Minister of Health supports PH awareness

21 June 2015

Minister of Health Leo Varadkar attended the official opening of the National Rare Diseases Unit in the Mater Hospital on the 4th June and took the time to give the thumbs up for Pulmonary Hypertension awareness. We appreciate his help and support in spreading the word!

Register for Patient and Family Meeting 2015

06 May 2015

We’d just like to remind everybody who is planning to attend the Patient and  Family meeting 2015 this Saturday 9th May at the Gresham Hotel, Dublin that it is very important to register for the event (there is no charge to attend). Please do so by contacting  Regina Prenderville – Tel: +353 -1 -854 -5172 or +353-87-637-6563  or email: pha@mater.ie

You can download full details of the meeting at this link. We look forward to seeing you there.

Riverdance Get Breathless to support PH Awareness

05 May 2015

Today on World PH Day 5th May, the world renowned dance troupe Riverdance stepped out to support PH awareness and PHA Ireland. As they prepare for their run in Dublin’s Gaiety Theatre this summer, members of Riverdance struck quite the stylish pose in our PHA Ireland t-shirts and created perhaps the most energetic spectacle of ‘Getting Breathless for PH’ that we have seen so far in our campaign.

Regina Prendeville, PHA Ireland, commented at the event “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”.

We wish to offer our sincere thanks to Julien Erskine and the fabulous Riverdance troupe for volunteering  to highlight World PH Day 2015. Thanks also to 1Escape Gym for their support.

World PH Day 2015

29 April 2015

Only five days to go to MAY 5, WORLD PULMONARY HYPERTENSION DAY

Patient associations around the world are busy organising their celebrations for this important event which aims to raise awareness of pulmonary hypertension (PH), a little known and life threatening lung and heart condition. More awareness can lead to earlier diagnosis and initiation of treatment and this in turn can mean the difference between life and death! Time really matters in PH!

For our part in PHA Ireland we have gained the support of the Riverdance troupe. They will launch their Dublin show on May 5th to the media and in support of World PH day will wear our PH Ireland association t-shirts and proudly get breathless for PH. We’re hoping for a strong exposure to the media for Pulmonary Hypertension awareness by this very welcome support from the world renowned Riverdance.

Our European colleagues have asked that we please support WorldPHDay by joining the  Thunderclap campaign at https://www.thunderclap.it/projects/24628-world-ph-day-2015…

If you want to participate from home in the World PH day you can by adding to the photo mosaic at www.WorldPHDay.org/WorldwidePhotoMosaic