SYMPATH-FAHR-MIT BIKE TOUR 2015
Even though it is the second most common neurodegenerative disease, many people do not realize the challenges Parkinson patients are confronted with on a daily basis. We wanted to raise awareness among the general public and give stakeholders a forum in which to discuss current issues about Parkinson’s disease, its diagnosis and therapy. Therefore, and in cooperation with the patient organisation “Parkinson Selbsthilfe Österreich”, the SYMPATH project organised the first SYMPATH-FAHR-MIT-bike tour. Over seven consecutive days up to 16 Parkinson patients took to the road to cycle between Innsbruck and Vienna. Together with experts, politicians and celebrities this tour served as a highly visible sign to improve the diagnosis and treatment of Parkinson’s disease. We also wanted to draw attention to the many, and varied, challenges this incurable disease poses each patient and also to society as a whole.
The SYMPATH project, with its four Austrian partners AFFiRiS, biolution, Innsbruck Medical University and Prosenex, organised the bicycle tour in close cooperation with the Austrian patient organisation for Parkinson’s disease. We jointly developed the concept of a tour linking the clinical centres in Innsbruck and Vienna. Working together with local chapters of the patient organisations, local committees were established to prepare events to welcome the cyclists in Innsbruck, Kufstein, Salzburg, Linz, Amstetten, Krems and Vienna. An integral part of this tour was to bring politicians, civil servants, neurologists, patients and their representatives together for informal information exchange. This ambitious concept succeeded thanks to an informative travelling exhibition incorporating interactive elements, designed to simulate the symptoms of Parkinson’s disease. The many pictures, positive feedback and numerous press reports bear witness to the success of these events. Dr. Iris Grünert who, along with her team, organised the event, was pleased with the positive feedback, in particular on the part of the participating patients: “Cooperation with patient organisations has established valuable contacts, of which we will certainly benefit in the course of the project. I am glad that the patient organisations also considered this joint initiative a success.”
Many stakeholders from politics and medicine have supported us during the event and we have recorded their positive impressions, which we reproduce here. We thank everyone involved for their many contributions which together contributed significantly to the success of this initiative.
“The forward-looking gaze of the cyclists, the drive to push further and further, shall be an allegory for our efforts towards finding a cure for Parkinson’s disease.”
Prim. Dr. Dieter Volc
“We must continually search for new drugs; in order to give those affected the best possible support.”
Oed-Öhling, in Vertretung vom Landeshauptmann Dr. Erwin Pröll
“I see people who, despite their illness, demonstrate exceptional physical performance and thus set an example.”
Prim. Univ.-Prof. Dr. Gerhard Ransmayr
AKH Linz, Abteilung für Neurologie und Psychiatrie
„Lots of positive movement for body, soul and spirit“
Präsident Landesverband OÖ der Parkinson Selbsthilfe Österreich
“The organisers of the bike tour point out the special requirements of those affected and inform the general public”
Eva Maria Gattringer
Landtagsabgeordnete, in Vertretung vom Landeshauptmann Dr. Josef Pühringer
“It was a matter of great importance for me to be able to cycle along (with the Parkinson patients). It can affect each and every one of us. The researchers should research.”
Paralympics Teilnehmer und Rennradprofi
„A very important event! Cycling with Parkinson’s disease is possible!“
Mag.Dr. Alexander Aschenbrenner
“People with Parkinson’s disease belong in our society, to working life and clubs. For each and everyone have strengths that promote a sense of belonging.”
Mag.a Anja Hagenauer
Vizebürgermeisterin der Stadt Salzburg
“Through this activity, public awareness of one of the major neurological diseases will be raised whilst simultaneously demonstrating that even in the presence of a neurodegenerative illness physical activity is possible. Those affected contribute to the treatment of their disease by Mens sana in corpore sano“
Prim. Univ-Doz. Dr. Klaus Berek
Fachabteilung für Neurologie, BKH Kufstein
“Currently, there is unfortunately no treatment that can stop the progression of the disease. In this regard, the SYMPATH project for the research into an immunotherapy against Parkinson’s disease is of particular importance.”
Prof. Dr. Werner Poewe
Vorstand Universitätsklinik für Neurologie, Medizinische Universität Innsbruck, SYMPATH
„Out of isolation and into moving research. I wish the tour a high profile and the project great success“
Hermann Weratschnig, MBA MSc
2. Vizepräsident des Tiroler Landtages
Parkinson’s patients cycled in seven days up to 400 kilometres across Austria, alongside experts and celebrities, in the first SYMPATH-FAHR-MIT-bike tour. On 30th May the tour started in Innsbruck and seven days later the patients arrived successfully in Vienna, where a welcome reception was held at campus Vienna Biocenter.
Marianne Klicka, the president of Vienna City Council, was present to support the event and was duly impressed by the project and in particular by the performance of the cyclists: “Cycling is good for everyone, whether they suffer from Parkinson’s disease or not. The tour from Innsbruck to Vienna presented a significant challenge.
The patients not only showed courage and perseverance, but also improved their quality of life”, Klicka stressed. She spontaneously invited all project participants to a reception at Vienna City Hall in order to thank everyone involved for this outstanding event.
Manfred Pallinger, section head for disability, pension, care and social welfare affairs also paid his respects to the cyclists on behalf of Federal Minister Rudolf Hundstorfer: “As role models the affected cyclists contribute to the elimination of prejudices and are ambassadors for raising public awareness”.
For Renate Lemanski, chairwoman of Landesverband Wien Parkinson Selbsthilfe Österreich (Austrian National Association of Parkinson’s disease self-help groups – Vienna Chapter) the SYMPATH-FAHR-MIT-bike tour continues to contribute to drawing attention to the active and extensive range of support provided by self-help groups in Austria, as “Self-help provides the means to cope better with the disease in the Community.”
This team spirit was also underscored by Dr. Achim Schneeberger (AFFiRiS), coordinator of the project, who summarised: “The participants on our bike tour have grown together as a team and people are already talking about a sequel.”
Research projects face the difficult task of communicating complex scientific issues to the general public. It is a particular challenge to explain the potential medical progress of a clinical trial without raising exaggerated expectations, particularly in those affected and their families. SYMPATH has successfully met this challenge through a bicycle tour aimed at putting different interest groups in contact with each other.
Promoting intense engagement with the subject and facilitating discussions, on an equal footing, between stakeholders was an integral part of our concept. We took on board the wishes of Mag. W. Schmutz (Landesverband NÖ der Parkinson Selbsthilfe Österreich, JUPPS Gruppenleiter; Austrian National Association of Parkinson’s disease self-help groups – Lower Austria Chapter, JUPPS group leader), who requested “not to talk about patients, but with them.” The enthusiastic feedback from many participants provides strong evidence that we were able to do just that and even exceeded expectations. Thus, the bicycle tour has made an important contribution to the SYMPATH research project by establishing an open and critical discourse.
We are confident that a foundation for future discussions has been laid, thus providing an important basis to support the dissemination of our research output to the various stakeholders. But most importantly, as Dr. Markus Mandler (AFFiRiS) put it, “Ride with us, join us, let’s work together for better therapies and a better understanding of the problems facing patients”.
We are very pleased with the lively media interest, reflected in the many reports across all relevant media, which brought the topic of Parkinson’s disease to a much wider public. We hereby thank all participants and sponsors for their support and hope that a sequel with similar success will be possible.
FAHR MIT – thanks the supporters: