A FAMILY’S VICTORY, A NATION’S HOPE: THE STORY OF PHA AUSTRIA

PHA AustriaBy Gerry Fischer, Founder

Immediately after my daughter Maleen was born, she suffered from a very serious case of pneumonia. My wife and I went to several physicians and, instead of helping us, they demanded patience from us. After a long drawn out period of uncertainty, Maleen was finally diagnosed as suffering from idiopathic pulmonary arterial hypertension at the age of three years. At that time there was still no treatment for children available in Austria and we were sent home with the words: “Sorry, we cannot do anything about it. Your daughter will not live past five years old. Unfortunately, there is no therapy or cure for pulmonary hypertension for children.”  I refused to accept this and was fortunate enough to be able to take Maleen to the Presbyterian Hospital at Columbia University in New York, where Dr. Robyn Barst was in charge of the centre for research and treatment, and where the research was considerably further advanced. Since then my daughter has been receiving her life-saving Flolan medication intravenously by an injection pump.

It was at this time that I wondered why no cure for this disease had been discovered. I was told that there were too few patients to motivate the pharmaceutical companies to engage in intensive research and that significant amounts of funding were necessary in order to find a cure. This is why I acted on my own initiative and set a goal of raising funds in order to support the research and help those affected by the disease. That is how the Austrian PH Research Foundation was born in 1999. The Austrian Patient Support group, chaired by Klaus Koerner and myself, was also active at the time. In April 2005, the “Initiative against Pulmonary Hypertension” (the name we gave to the Austrian PH Research Foundation and Patient Support Group working together), was founded with the help of our primary two-year sponsor (the BA-CA Bank).

The Initiative against Pulmonary Hypertension works to help PH patients and families in social matters (such as work issues, getting a parking id, assisting with health insurance and travel, guaranteeing easy access to PH medication, etc.). We also assist with training patients and nurses in PH medications. We have skilled staff to provide psychological care and we provide a patient mobile phone help line to enable patient-to-patient communication. We also arrange patient meetings twice a year and organise biannual meetings of the medical superintendents of health insurance companies with medical advisory board physicians. Most importantly we promote PH awareness under the title “BREATH-TAKING” throughout Austria, including campaigns recommending that PH patients be referred for treatment to specialized PH centres.

Another area of our activities is to raise money to fund PH research projects for advancing effective therapies and finding a cure. Our team of three talented and multi-skilled staff members have been able to bring in personal contacts who have helped make our fundraising efforts very successful. In August 2005, we launched the Project of the Milestones: for a donation of 25 Euro, benefactors could purchase one of 20,000 paving stones engraved with their name and a motto. Each single milestone became a contribution to the “Place of the Milestones” in front of the Planetarium in the Viennese Prater (a famous park in Vienna). As the project progressed, friends of mine – famous Austrian musicians Rainhard Fendrich, Wolfgang Ambros and Georg Danzer, known as the AUSTRIA 3 – agreed to perform free of charge at a “breathtaking” open air concert. Each milestone purchased was also a ticket to attend the concert, which was held 20 May 2006 in the Viennese Prater (12,500 milestone owners attended).

We have also undertaken other fundraising and awareness raising initiatives, including one in cooperation with McDonald’s: sheets lining trays at each McDonald’s in Austria promoted the “breathtaking” Milestone Charity Concert for two months. A press conference including the Austrian McDonald’s leader as well as some celebrities and other key people was also held to launch the “breathtaking” McDonald’s campaign. Additionally, we held a charity aerobic marathon where people were offered special passes to attend various exercise classes, partake in healthy snacks as well as a show and raffle. A private stamp collection was put up for an auction on eBay, a “Mystiq” party launching a new drink, charity football matches, golf challenges, a charity circus gala event and the Stroeck-Christmas tramway are some of the other “breathtaking” events we have held to raise money for the Initiative Against Pulmonary Hypertension. We are very proud that our fundraising efforts have allowed us to support two PH research centres located in Graz and Vienna by paying the salaries of medical researchers.

Multiple personal contacts and long-term experiences from various professions are the basis of the Austrian PH team. Former jobs in areas such as the travel industry, event-planning, artist management and marketing, project management and fundraising within non-profit research organizations and work in the pharmaceutical industry have allowed us to create relations with a pool of celebrities, opinion leaders and potential sponsors who are happy to be involved in charity and fundraising events for the benefit of PH awareness. We have been lucky to have so many influential people come together to help accomplish our main objective – a cure for Pulmonary Hypertension.

© 2006

 

The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

801 Roeder Road, Ste. 1000, Silver Spring, MD 20910   Patient-to-Patient Support Line: 1-800-748-7274
Webmaster@PHAssociation.org
    Privacy Policy   Virtual Tour of Website    Provide Feedback & Report Bugs

Designed by Matrix Group International, Inc.® | © 2014 Pulmonary Hypertension Association. All Rights Reserved.

NORD

The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.