January 15, 2019

Germany | Dystonie-und-Du 

On October 14 2017, former members of the self-help group Mannheim / Ludwigshafen decided to found a new SHG: the group Rhein / Neckar. At the same time, the plan to create a new association for people suffering from dystonia matured.  

Finally, on November 11, Evelyn & Volker Kreiss, Elke & Horst Roth, Susanne & Edwin Kerschbaum, Dr. Anja Dellmann and Daniela Jäger met in Mannheim to found the association „Dystonie-und-Du“ (“dystonia-andyou”). Since then, the following SHGs have been formed within the association: 

  • Rhine / Neckar     
  • Karlsruhe     
  • Heilbronn and Schwetzingen     
  • Nationwide the SHG “deep brain stimulation” group     
  • Berlin,  Hannover and Dresden will follow later this year 

Initially being limited to the state of BadenWürttemberg, the preparations for going nationwide are now in full swing. Our goal is to be a federal association from 2019. Therefore we have quickly removed the initial “BW” in the club name and logo, so that brochures, business cards, roll ups etc. will not have to be changed and redesigned next year.   

We, as all of you, have made our mission to help people with the disease dystonia, to support them and to communicate with each other. Our motto is: Not lonely – rather together 

And: not the association, the person affected by the disease is important. 

Patients first. 

Six of our seven board members are provided with dbs and therefore the main focus of our association is the Deep brain stimulation.   

We are glad, proud and happy to have already gained many members. Especially in the beginning the costs and expenses are high. When we hosted our first big event in April 2018 in Bad Herrenalb, we did not know to what extent the Health insurance companies and the industry would participate in it.                                      

But we took the risk of having to cover the costs ourselves deliberately in the interests of all patients to quickly proceed forward.   

Despite the headwind coming from certain directions, we have continued to go our own way. We have mastered this with the knowledge of the trust of our members and we hope to be able to continue this journey with our members.   

We are already looking forward to November, 10 2018, when we will host our “anniversary event” (one year of DyD) in Karlsruhe under the motto “… about dystonia …”. More information about this event can be found soon on www.dysd.de. 

Foto: stephan-roehl.de

Written by:
Volker Kreiss
President 

 (translated by Juliane Halsch)