Mariposa Journal Summer 2013 with World PH Day & Ironman

Welcome to this special edition of the Summer 2013 Mariposa Journal, which reports on the inspirational activities from the “Get Breathless for Pulmonary Hypertension (PH)” campaign and IRONMAN Europe, to mark the second World Pulmonary Hypertension Day (WPHD).

 

Austria Kicks-Off WPHD in Style

As football has by far the biggest following of any sport in Vienna, Austria kicked-off their WPHD activities with a football tournament and opened it up to everybody, including club players and the public.

 

 

 

 

 

 

 

 

 

 

Belgium Puts up a Fight for WPHD

Belgium’s campaign took on PH with the support of professional lightweight boxing champion J.P. “Junior” Bauwens, who showed youngsters how to keep their guard up against PH. Junior knows what it is like to fight both in the ring and in real life. He is the eldest brother of seven, and four of his brothers are autistic. When Junior fights in the ring, he is fighting for his mother and his family.

 

 

 

 

 

 

 

 

 

Boogying in Bulgaria for PH Patients

The Bulgarian Society for Patients with PH (BSPPH) celebrated WPHD for the first time this year. Under the patronage of the Mayor of Sofia, Yordanka Fandakova, the awareness raising event was held in an unusual and attractive location – in front of the National Palace of Culture in the capital of Bulgaria, Sofia. Bulgaria embraced the campaign theme “Get Breathless for PH” by focusing on sports, dance and movement within the active community of people who wanted to help raise awareness and inform the non-patient community about this rare and devastating condition.

 

 

 

 

 

 

 

 

Czech Republic breathes Life into PH

Situated on the banks of the Vltava river, in a multifunctional sport and relaxation center, Žluté Lázně (Yellow Spa), with a beautiful backdrop and one of the most spectacular views of Prague – the Prague Castle and Hradčany, the Czech Republic PH Association held its sports event to celebrate WPHD in style. Our patients, their families, friends and our PH doctors participated in football, tennis and table tennis.

 

 

 

 

 

 

 

Pedaling for PH in Athens

Embracing the theme of sport, the newly founded organization, PH Greece, chose cycling to mark this year’s WPHD. It was felt that cycling was the perfect choice as it focuses on the cardiovascular system and, at the same time, promotes entertainment, commuting, protection and improvement of health and, last but not least, respect for nature and the environment.

 

 

 

 

 

 

 

 Hungary kicks up a Storm for WPHD

Tüdőér Egylet, the national patient organization of Hungary, invited all the members and volunteers to celebrate WPHD in the heart of Budapest, Vörösmarty tér. The day kicked off with a press conference in the well known traditional patisserie “Gerbaud”.

 

 

 

 

 

 

 

 

 Ireland’s Ladies “Get Breathless” in Dublin

On 17 March the Irish Ladies Rugby Team made history by winning the much coveted 6 Nations & Grand Slam trophies. Having previously beaten their old rivals, England, Scotland, Wales and France, the final match was against the Italians, on a cold miserable day in Milan. The match was tough and was far more punishing than any other in their historic campaign. The opposition were physically bigger, the pitch was hard and muddy and temperatures were freezing – but the Irish dug in and managed to overcome their Italian rivals and were victorious in their battle to be the winners!

 

 

 

 

 

 

 Israel puts the Public Through their Paces for WPHD

Israel’s Pulmonary Hypertension Association commemorated WPHD with two successful programs based on the theme of sports and fitness. To start Israel’s campaign 70 adults and children participated in a 10 km run held in the center of the country. Participants wore the specially branded WPHD t-shirts and a booth at the event provided information about PH.

 

 

 

 

 

 

 

 

 The Pope encourages PH Patients on WPHD in Rome

To coordinate efforts with all the PH organizations around the world and to get as much visibility as possible, Italy’s PH patient association AMIP took part in the Rome Marathon, a big international event that brings thousands of athletes to Rome from all over the world.

 

 

 

 

 

 

 

 

Let the Games Begin! Latvia hosts Charity Sports Day

Latvia’s WPHD turned into a beautiful and active holiday among friends and families through charity “Get Breathless for PH” sports games held in Salaspils, near Riga, the capital of Latvia. The event attracted great interest with 224 participants ready to “Get Breathless for PH” on a sunny spring day. Among them there were teams of adults, children and representatives from non-governmental organizations and Games’ supporters Salaspils District Council.

 

 

 

 

 

 

 

 

 

A Knock-Out Event for Poland

Warsaw and one of the most popular buildings in the city. The boxer’s fans came to see him and participate in the event. The main TV news stations and a group of photo journalists arrived at the Palace where volunteers distributed information both about PH and the event.

 

 

Portuguese Patients show Greath Strength on WPHD

Deep in the heart of the Bussaco National Forest, the Portuguese Association for Pulmonary Hypertension (PAPH) marked WPHD under the slogan “Breathe and get breathless to live and fight for health care” with the support of patients, their families and friends.

 

 

Slovakia Volleyballs to Success

Volleyball was the name of the game for Slovakia’s “Get breathless for PH” campaign. Together with volleyball club, Polar, in Veľký Krtíš, nine teams from around the country attended this event and played non-stop for 12 hours on two volleyball courts. The opening of the tournament was attended by PH patients, physicians and members of Slovakia’s PH Association, and began with a speech from Slovak PHA president Iveta Makovníková, in which she honored and remembered all patients who had passed away due to this devastating condition with a minute of silence.

 

 

 

 

 Mixing it up for WPHD in Slovenia’s Capital City

The Slovenian patient group got breathless for PH with an epic football and basketball tournament in Ljubljana. Both tournaments kicked off in the Park Ježica stadium at the same time, enabling the spectators to watch all of the games simultaneously. There were four football and four basketball teams competing against each other and even though the athletes’ main aim was to raise awareness of PH, they managed to put up quite a show and pull off some spectacular moves!

 

 

 

 

 

 

 

 

 

 

 

Russia’s Great Cities Host WPHD

Russia marked WPHD for the first time this year, beginning with two dedicated conferences in Moscow and Saint-Petersburg. The main goals of the meetings were to highlight the issue of the provision of PH medicines and to raise awareness about PH among healthcare professionals. The conference was attended by representatives from the Ministry of Health, the pharmaceutical firm Actelion, the charity fund “Natasha” and the non-governmental organization “Russian Society of Rare (orphan) Diseases”.

 

 

 

 

 

 

 

 

 

Singing for PHin Switzerland

On June 30 the Swiss PH patient assocation SPHV organized a charity concert to raise awareness of PH for WPHD in Birsfelden, in the Basel canton. The concert featured the Schützenchorli group from Aarberg, singing traditional yodelling songs, and a Monastery Choir. The highlight was the internationally acclaimed Oesch’s musical family.

 

 

 

 

 

 

 

 

 

“Getting Breathless for PH” around the World

A few PH associations around the world wore our tshirts for their WPHD events! A “Get Breathless for PH” ski tournament took place in Hokkaido, Japan, in February. iS EEK China had a “Get Breathless for PH” stair-climbing competition and used the t-shirts for other non-sports events as well. The t-shirts were further used at a parade rally in Chile, at a WPHD event in Costarica and at a patient meeting organized by PHA Australia in memory of a little boy who has passed away from PH. Many thanks to all on behalf of PHA Europe!

 

 

 

 

 

 Ironman Lanzarote, Spain

Harnessing the theme of sport, PHA Europe teamed up with the IRONMAN European Tour to raise awareness of pulmonary hypertension as part of its “Get Breathless for PH” campaign for WPHD. Over the past 35 years IRONMAN athletes have tackled what is widely considered the toughest oneday endurance event in the world.

 

 

 

 

 

 

 

Ironman Berlin, Germany and Nice, France

Following the success of Lanzarote the IRONMAN experience has been an increasing success with every country for different reasons. The lessons learned and the great cooperation with the organizers made the impact of PHA Europe’s presence at each race even stronger.

 

 

 

 

 

 

 

 Ironman Klagenfurt, Austria and Haugesund, Norway

Everybody in the team of the Austrian patient association was very excited to go to the beautiful lake in Carinthia called “Wörthersee” to be part of the Klagenfurt IRONMAN race. The atmosphere, emotions, family feeling and the constant tension in the air was incredible and we were more than overwhelmed by the experience.

 

 

 

 

 

 

 

A Unifying Website helps World PH Day reach its Potential

In order to make World Pulmonary Hypertension Day a more global effort this year, the PH associations around the world decided that we would need a website. Pisana Ferrari of PHA Europe noticed that the Lupus Foundation had an excellent website for their World Lupus Day. The World PH Day website (www.worldphday.org) borrows their idea of having a map with different regions that visitors can click on to get events happening in that area, which has been a great success for the PH associations.

 

 

 

 

 

 

 

Here you can read the full Mariposa Journal Summer 2013!