Report from Cologne
Author
Bernd Dobbert, as published in Alpha1 Journal 2/2017
Our meeting on November 4th was a great success. We had over 30 participants and a lively discussion ensued. Our doctor, Dr. Prickartz, had to cancel at short notice because his car broke down on a ferry, but he was able to send a substitute who did a fantastic job.
Peter Kukry then led us in an exercise session using Alpha-1 resistance bands, and with his extensive knowledge of the secondary respiratory muscles, he encouraged everyone to participate in pulmonary exercise. I will also be joining pulmonary exercise classes starting in January. There were 20 of us at the subsequent meal, and it was a very pleasant time. Many thanks to Alpha1 Germany for covering the costs. Membership in Cologne is now around 80. My deputy, Barbara Pixa, and I would reach 100 next year if two members hadn't decided to start a new group. More on that in the new year. Nevertheless, our long-term goal remains 100 members.
Since I am very interested in the European level, I translated the European brochure „Time to Get Better“ into German and handed it over to Frank Willersinn.
I am continuing to work on establishing a contact for the implementation of a very exciting YouTube project – more on that in 2018.
Incidentally, I've become a patient advocate for ERN liver disease. ERNs are networks for the exchange of medical personnel at the European level, dedicated to addressing the needs of patients with rare diseases. This naturally requires patients who are actively involved in ERN circles. I applied for the Alpha-1 group, which focuses on metabolic liver diseases, but I also pointed out that I travel very frequently and won't be able to participate in all national and international activities.
All the best, warm regards and see you soon!
Bernd Dobbert, as appeared in Alpha1 Journal 2/2017.
