PULMONARY HYPERTENSION MariposaJournal SUMMER 2015 • PHA EUROPE’S OFFICIAL JOURNAL • N. 14 GIANT FERRIS WHEEL IN VIENNA TURNS BLUE IN HONOUR OF WORLD PH DAY! Wilhelmstraße 19 • 1120 Vienna • AUSTRIA • +43 1 4023725 • +43 1 4093528 • [email protected] • www.phaeurope.org Editor’s memo prominently in the online health and public policy conver- Summer 2015 edition sation. More success came in the form of our collaboration with the Ironman European Tour, as it proved once again to be a pow- AustriaAustria erful outreach initiative. As the Official Charity Partner of BelgiumBelgium the Ironman European Championship in Frankfurt our presence at the race exposed our message to thousands of spec- Dear members, supporters, friends and families, putting their own unique twist on events, ranging BulgariaBosnia tators and our articles in the official Ironman newsletters from Irish dancing from our Gaelic friends in ensured thousands more found out about PH. Six brave ath- the Summer Mariposa is here! We know you have Ireland to the breathtaking feat of climbing the CzechBulgaria Republic letes took part in the grueling triathlon proudly wearing our been looking forward to this special edition fea- snowy peaks of Rysy Mountain by members and branded race suits on behalf of PHA Europe and thousands CzechFrance Republic turing the exciting array of events you all con- supporters of the Czech and Slovakian associa- “rang the bell” under the “Get breathless for PH” branded arch ducted to mark World Pulmonary Hypertension tions. WPHD activities took place in many other on a hot spot of the race course to raise money for the local GermanyDenmark Day (WPHD) 2015. Carrying on the theme from countries across the globe including Australia, German PH association - pulmonale hypertonie e.v. previous years, your “Get Breathless for PH” activ- Canada, China, Latin America, the Middle East GreeceFinland ities have been truly inspirational including and the U.S.A - meaning PH awareness was spread All of these inspiring activities were supported by our updated As you turn to the next page and bear witness to all of the suc- flashmobs, sporting events, social media activities across 45 countries in five continents! HungaryFrance WPHD toolkit, as well as a whole host of branded materials cesses we have achieved in 2015, let us take this time to cel- and even a new World Record! We want to thank which you all put to great use, judging from all the fantastic ebrate our collective accomplishments and to look forward to GermanyIsrael you warmly for your continued support, dedication This year we also introduced the #BreathofSuccess photos taken! even more success in the future. and hard work in raising awareness, educating the initiative to the campaign, an educational, story- ItalyGreece public, lobbying for improved treatment options sharing activity that aims to increase understanding As I close, I want to thank each and every one of you again for Gerald Fischer and optimal care for those living with PH. of chronic thromboembolic pulmonary hyper- LatviaHungary your remarkable contribution and perseverance in our pursuit PHA Europe President tension (CTEPH), the only type of PH to have for improved treatment and care for those living with PH. A Through our joint efforts, a little known condition, potentially curative surgery without having to NetherlandsIreland very big thank you also to our industry partners, Actelion and See more WPHD and IRONMAN photos at: pulmonary hypertension (PH), is increasingly being resort to lung transplant. One of the highlights of Bayer Healthcare, whose partnership and dedication to WPHD https://www.facebook.com/pages/Pulmonary-Hypertension- NorwayIsrael made known across the world. More and more the #BreathofSuccess campaign was the inspira- has allowed us to grow from strength to strength every year. Association-Europe/141060385915366 celebrity endorsers and influential public figures are tional film of Gabriele, who underwent successful PolandItaly joining our cause, including political leaders and thromboendarterectomy surgery for CTEPH. His health ministers, sporting heroes such as The account of the severe limitations with the disease PortugalLatvia World’s Strongest Man, Franz Müllner, Olympic prior to surgery, to post surgery and being able to CONTENTS TuRussiaLithuaniaTu r key r key Gold Medal swimmer Federica Pellegrini, World play and coach the sport he loves again was truly Champion free diver, Goran Čolak, as well as the touching to watch. #BreathofSuccess continues NetherlandsSlovakiaTuTu r key r key world-known Riverdance group, rock bands "Beni throughout the year and we hope to see many • WPHD 2014 Europe - National events - PORTUGAL p. 30 and Non Stop" and "Neverland" and singing sen- more positive stories being shared! - AUSTRIA p. 4 - REPUBLIC OF MACEDONIA p. 32 SloveniaTuNorwayTu r key r key sation Iván Gardesa. These are only a handful of - BELARUS p. 6 - RUSSIA p. 34 the big names that pledged their support and This year again the media played a vital role in SpainPoland - BELGIUM p. 7 - SLOVAKIA AND CZECH REPUBLIC p. 36 proudly stand in solidarity with PH patients - it’s accelerating the reach of WPHD. Due to all of - BOSNIA AND HERZEGOVINA p. 9 - SLOVENIA p. 38 SwedenPortugal incredible to see them sharing in our successes and your amazing work and newsworthy activities, we raising the profile of PH. generated over 500 press/online articles, and almost - BULGARIA BSPPH p. 10 - SPAIN p. 40 RepublicSwitzerland of Macedonia 100 TV/radio broadcasts! Social media also proved - PHA BULGARIA p. 11 - SWITZERLAND p. 42 Twenty five countries in Europe united together this to be a great platform to drive momentum and - CROATIA p. 13 - UKRAINE PHA p. 44 TuRussia r key year to “Get Breathless for PH”, with each country helped us to spread our messages even further. The - FRANCE p. 14 - UKRAINE SISTER DALILA p. 45 PHA Europe Facebook and Twitter pages Slovakia - GERMANY p. 15 received a huge surge in page visits and “likes” • WPHD 2015 Europe - IRONMAN p. 46 - GREECE p. 16 throughout the campaign indicating increased Slovenia - HUNGARY p. 18 levels of engagement. • WPHD 2014 - Rest of the world Spain - IRELAND p. 20 - Australia, Canada, China, Latin America, For the second time in the history of WPHD, - ISRAEL p. 21 South Africa, United Kingdom, USA p. 50 Sweden we launched our “Thunderclap” online social - ITALY AIPI p. 22 • Media clippings p. 52 media campaign: 158 people signed up to Switzerland - ITALY AMIP p. 22 send out a coordinated message from their - LATVIA p. 24 • Upcoming events 2015 p. 57 Facebook, Twitter and Tumblr channels on Tu r key - LITHUANIA p. 26 May 5, garnering a social reach of 139.694 • Members of PHA Europe and contact details p. 58 - NETHERLANDS p. 27 Ukraine people - a rise from last year! Over 2.125 uses of the #WorldPHDay and #Breathof- - POLAND p. 28 • What is Pulmonary Hypertension? p. 60 Ukraine Success hashtags ensured that PH featured Ukraine WPHD 2015 - AUSTRIA WORLD’S STRONGEST MAN ACHIEVES NEW WORLD RECORD TO MARK WPHD In support of WPHD, the strongest man in the for WPHD. The event created high media interest, world, Franz Müllner, achieved a new world record and journalists were able to hold exclusive interviews by exercising for an extraordinary ten hours on top with the world’s strongest man. of one of Austria’s most famous sights, the Wiener Congratulations to Franz Müllner, who achieved a Riesenrad (Viennese Giant Ferris Wheel) to show new world record in support of WPHD! how exhausted a patient with PH feels on a normal See video at: day doing everyday activities. https://www.youtube.com/watch?v=bhcgOv- At 9am, Gerry Fischer, President of the Austrian cosoM&feature=youtu.be Patient Association, Werner Gruber, a famous tel- evision personality and Karlheinz Hora, the borough mayor, gave the starting signal for Franz to begin his A dream comes true for 7-year-old PH impressive world record attempt. Hundreds of spec- patient tators gathered to watch the world’s strongest man In addition to the world record attempt, PHA lift 240.000 kg and ride 200 km on a bicycle at a Austria was also able to grant 7-year-old PH patient height of 65 meters. Johannes’ wish of riding in a Lamborghini. Police PHA Austria’s booth was directly in front of the escorts gave him an exciting tour through the city Wiener Reisenrad and next to the main entrance of of Vienna and Johannes even got to sit on Franz the Viennese Prater. For a donation of € 15 Müllner’s bespoke motorbike! minimum, visitors could buy a ticket to enter the VIP cabin to watch Franz Müllner complete his world Gerald Fischer record attempt. In addition, ticket holders received Selbsthilfegruppe Lungenhochdruck a “Get Breathless for PH” T-shirt, a blue lips lollipop www.lungenhochdruck.at and a blue balloon, in support of WPHD. The www.facebook.com/pages/Lungenhochdruck- Vienna giant ferris wheel was lit up in our color blue Austria/141174239237050 4 5 WPHD 2015 - BELARUS WPHD 2015 - BELGIUM BELARUSIAN PH ASSOCIATION CAREGIVING TRIUMPH MORE THAN JUST A DAY: BELGIUM HOSTS AN EXCITING 3 MONTH PROGRAM OF WPHD ACTIVITIES The Belarusian Pulmonary Hypertension associ- A whole host of events were conducted in Belgium Out of the Blue! Blue Lips Campaign rallies ation, “PH Patient Help”, hosted an interactive day to mark WPHD across a three month period, rein- support from local school children to educate and raise awareness of PH for WPHD forcing the fact it is important to raise awareness of Alongside the “Get Breathless for PH’”activities, the this year. The event, held at the Minsk Regional pulmonary hypertension on an ongoing basis, beyond Blue Lips Campaign saw school children, teachers Hospital (Belarusian Medical Academy of Post- May 5 itself.