Quo Vadis dPV?

My very personal story
 In 2019 I was surprised by the diagnosis of Parkinson's and anyone who has had this experience knows the feeling of helplessness, panic and uncertainty.

In search of support, which, like many others, I found only very rudimentary from my neurologist, I ended up at the German Parkinson's Association. It was a bit strange for me at first, because as a former manager of medium-sized software companies, I found it very difficult to cope with the somewhat dusty print world. But I had to learn two things: the essence of self-help is driven by people and whether it's print or website doesn't matter. And the second thing I had to learn was that the dPV has so far failed to provide new blood and the ever-growing number of young people suffering from Parkinson's disease has simply been forgotten. Even the delicate plant JuPa (Jupa stands for Jung suffering from Parkinson's disease) is now a waste after the driving force behind it, Winfried Scholl, has given up, unnerved and discouraged by the confusion surrounding the financial scandal. But all of that was of secondary importance because I met people who helped people help themselves with a lot of enthusiasm and passion.

Then came the first turning point: at the invitation of the Munich regional manager, I became a member of the state delegates' conference and got an inside view for the first time. This had completely turned my previously positive view into the opposite. It was already obvious back then that numerous accounts were not declared or not fully declared in the annual reports. Worse still, the board members ran as delegates and were able to grant themselves exoneration in this way. But the summit was a self-aggrandizing managing director who was obviously not an executive body of the board, but rather acted like an absolutist despot and boss of the board. To make a long story short: This managing director was the now infamous lawyer Mehrhoff, who is currently being investigated by the public prosecutor for fraud or embezzlement of millions (forgive me for the unlegal formulation). 

My experiences with this gentleman resulted in me resigning as a delegate and canceling my membership. I promised the regional manager of the dPV in Munich that as soon as this unspeakable Mr. Mehrhoff was no longer managing director, I would be actively involved in the dPV again. In 2023 I became a member of the German Parkinson's Association for the second time.

Since it obviously doesn't do any good when a very rich quasi-monopolist determines action in the self-help world and there are also numerous gaps in the care of Parkinson's patients, it made sense for me as editor of the Parkinson Journal, together with Thorsten Boomhuis PingPongParkinson e.V. to found their own self-help organization.
And not in competition with dPV, but in addition to closing the supply gaps mentioned above.
Although we are still quite young, we have already come a long way on this path. We were able to close the gaps in the Parkinson's network world by establishing our own networks, we got the patient school off the ground, the “Living at the End of Life” project is in the starting blocks and we will be offering Tai Chi, therapeutic therapy nationwide in 2024 Boxing, Quigong and numerous lecture events.

So it's time to sit down at a table with the German Parkinson's Association to see how we can join forces. This resulted in the following cooperation proposal:

Cooperation agreement between the German Parkinson Association e.V.

and the Parkinson's Association eV

Commencement clause:

In view of our common goal of promoting the well-being of those affected by Parkinson's, the German Parkinson's Association and the Parkinson's Association recognize the advantages and possibilities of cooperative collaboration. Each of our organizations brings a unique perspective and valuable resources that, when combined, have the potential to make an even greater positive impact.

Article 1: Cooperative coexistence

The German Parkinson's Association and the Parkinson's Association are committed to cooperative coexistence, whereby the independence and individuality of each organization is preserved.

Article 2: Joint projects and recommendations

Both parties aim to carry out joint projects in non-competitive areas and recommend each other.

Article 3: Resolution of Conflicts

In the event of conflicts or competitive situations, both organizations are committed to finding a solution in the interests of those affected and with mutual respect.

Article 4: Parkinson's networks

The organizations work together as patient representatives in the existing Parkinson's networks and consider the establishment of new networks if this appears necessary.

Article 5: Events

The Parkinson Association invites members of the German Parkinson Association to the central competence center events. In return, the Parkinson Association would like to be invited to the regional information events of the German Parkinson Association.

Article 6: Content sharing

An exchange of content between dPV/Jupa and the Parkinson Journal is sought in order to benefit from the respective resources.

Article 7: Joint organization of events

Both parties cooperate closely when planning and implementing larger regional events.

Completion:

This Agreement is effective as of the date signed and will remain in effect until terminated by either party. Terminations can be made in writing with three months' notice to the end of a calendar year.

Where are we today?

Initially it seemed as if the DPV was seriously considering this proposal, but now, after months of waiting and being put off, the big bang came.

Yesterday I was informed that the board had approved a request to exclude me from the dPV. Alternatively, I was offered to terminate without notice and the board would then agree to the termination.

This was justified by paragraph 6.5.3 of the statutes 

“If a member acts in a gross or lasting manner against the reputation and interests of the association or one of its divisions or violates its statutes, so
it can be excluded by resolution of the board in cooperation with the respective state board.
In any case, such a violation occurs if a member participates in the founding of an association or is a member of it that pursues the same or a similar objective to the Parkinson's Association. “

What does that mean: A non-profit association that is dedicated to self-help and is equipped with significant public funds restricts the freedoms of its members by prohibiting them from membership in similar associations.

Of course, I agreed to the offer of termination without notice, because beyond the financial behavior of the past, the upheavals, dismissals and trench warfare within the association do not bode well for the future.

It's a shame, as I was actually optimistic that we could succeed in expanding the highly fragmented self-help landscape into an effective network for the benefit of those affected by Parkinson's disease.

But there are also positive aspects. We can maintain the speed presented and do not have to take into account the individual interests of an organization that is divided within itself. 

We no longer need to take any consideration when accepting new members and invite everyone who fears the loss of the non-profit status of their umbrella organization or even insolvency to actively participate in our organization or to simply take advantage of our diverse offerings as a simple member.

Jürgen Zender, January 2024