PPAN – Parkinson's Patient and Family Network
Do self-help and interest groups need a common network?
Wouldn't it be wise if all self-help organizations, or at least the majority of them, came together to bring much more strength to the streets by acting together? Nadine Matthes from Parkinson Youngster is trying to do exactly that with her new PPAN network, and she is by no means met with approval. We asked key players in the scene for their opinions and examined them from different angles in our new format, the Parkinson-Journal Magazin. We look forward to your comments and remarks. Stay active and informed! May Evers and Jurgen Zender
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Hello, I'm a bit irritated that there is this reporting in advance. In a conversation with Ms. Mattes, I, Wilfried Scholl, confirmed my participation on September 17, 2022 via zoom in order to find out more information about the network and those involved. Now it is assumed that I am already a member of PPAN. There was also no talk of a preliminary report, or in the future one should only publish things that have been approved in advance. This is how it should normally be done.
Dear Mr. Scholl, I am sorry that the article confused you. From our side, it is not only legitimate but actually necessary to report on such a project.
Since the invitation left some questions unanswered, Ms. Matthes acted wisely, in my opinion, by willingly answering the press – in this case us – these questions. And on the other hand, it didn't even give the impression that it could be a secret or even conspiratorial event.
Of course we have fulfilled our journalistic duty and the statements of the people we quoted have been released for publication. The same applies to the interviews.
The interviewees had been given the questions in writing beforehand and some of the answers had been recorded by our interviewees themselves. Where we had to shorten the interview due to time constraints, the complete version is available to everyone.
At the same time, we have taken care to strike a balance between the pros and cons arguments. With all due respect, you cannot expect more transparency, openness and objectivity.
As for her role in PPAN, we at Parkinson Journal have not spoken at all, let alone unfairly quoted her. What Ms. Matthes tells us about Internas is Ms. Matthes' sole responsibility.
I very much hope that Ms. Matthes' way of bringing about transparency will be sufficiently appreciated and that it will not harm her or her project.
Finally, allow me to make a personal remark. For many years there was no medium that journalistically and objectively accompanied the scene of organisations, clubs, associations, initiatives and foundations related to Parkinson's. In such a biotope, a lack of transparency and distrust can flourish. We have made it our goal to change this with the required quality. With the announced withdrawal of management staff in the dPV, the timing could not be more favourable.
With warm regards from Munich,
Jurgen Zender
Editor of the Parkinson Journal (PwP)