Berlin is worth a visit!
Hopefully, the "Corona era" is now behind us. We'll schedule the virtual group meetings for cooler days.
We were finally able to hold an in-person meeting. It took place in a charming restaurant called Julchenn Hoppe, in the Nikolaiviertel district of Berlin, right in the heart of old Berlin. We had a private room there. Peter Hübner welcomed Ms. Jeanett Heinneicke from the company Grifols as our guest.
The exchange of information ranged from private experiences, holidays, health and experiences during the Corona period in relation to substitutions in the doctor's office.
It is manageable for those who are still mobile, but for our Alphas who urgently need home substitution due to the course of the disease, no solution has yet been found.
What does the future hold for us Alphas? What does research reveal?
Jaenett Henneicke gave us a brief overview of possible treatment approaches, sorted by organ, liver and lungs.
Home substitution is still a topic of discussion, but no feasible option has yet been found.
Check out www.alpha1-deutschland.org again. Find out interesting facts and more.
Due to the Corona pandemic and the fact that meetings are only virtual, external support for our Alpha1 club has taken a back seat.
In previous years, several members of our self-help group participated in events such as Lung Day, Rare Disease Day, events organized by ACHSE or the Lung Respiratory League, etc. Our booth was always well-attended.
Another highlight:
Alpha1 Germany congratulates the HAEMA blood and plasma donation center on the 20th anniversary of its Berlin and Jena locations.
Hannelore Sistu from our support group attended the ceremony. A report about it was published in the Alpha1 Journal. She herself informed us how interesting everything was presented and explained. She was able to speak with donors and thanked them on behalf of our Alpha1 Berlin Brandenburg support group and all affected Alphas. Ms. Sistu was so impressed by her experience at the plasma donation center that she visits the center periodically to stay informed.
Peter Hübner and Mr. Rasper will be participating in the Lung Day on September 7, 2022 at the Charité, Virchow Clinic in Berlin, with a display in the foyer and a stand for Alpha1 Germany.
In the future, we want to restructure the "life" within our self-help group. How this will happen is still under discussion. Perhaps the younger members will organize activities on their own, while the older members meet for coffee and conversation. We'll see!
Petra Netzel informed the members that she would no longer be available as deputy to the GL from 2023. Peter Hübner presented her with a large, beautiful bouquet of flowers as a token of appreciation for her service.
We will need a new group leader in the foreseeable future, Peter Hübner informed us. As everyone knows, he is very busy with work and is also the treasurer of the Alpha1 Germany association. However, he doesn't want his family life to suffer. No one volunteered at the group meeting. There were open discussions on the topic, and individual meetings will follow.
The next meeting is not yet specifically planned. We'll have to wait and see how the coronavirus situation develops over the winter.
Yours sincerely, Petra Netzel
