Hello dear readers,
The „Corona era“ does not yet allow personal meetings, and so we held our meeting virtually again with a few Alphas, 6 people.
With some others We maintain constant contact with members of our self-help group through a WhatsApp group, as virtual participation via laptop or mobile phone is not possible. it doesn't work or the devices are not available.
Regarding WhatsApp, there was a suggestion to switch to "Signal" or "Telegram"„ This may be necessary due to the terms of use, however, it is a personal decision of the individual user.
Petra Netzel provided information from the virtual group leader meeting of May 11, 2021, noting that further information can be found online at [website address]. www.alpha1-deutschland.org can be found. Specifically, this concerns various studies on the topic of Alpha1.
Naturally, we are looking for "alphas" who participate in studies, and some group members have already participated in studies or are currently doing so. It is always important to thoroughly research the content of the presented study and then decide for yourself whether it is a good fit for you personally.
Another point was the use of additional information from our homepage.
Peter Hübner showed the way to the homepage and clicked on some topics, such as lectures about AlphaCare or lung exercise and movement in everyday life, above YouTube, or the information e.g. Alpha1 Information Day 2021 including a large anniversary celebration from September 24th to September 26th, 2021.
Speaking of which Information day in September in Kassel. More specific details will follow. Preparations are currently in full swing. We can already announce that the liver examination will be offered again. There will be many interesting presentations and a raffle, but we still need donations of items. If you have anything you can contribute, please contact the group leader by email or phone, or inform Marion Wilkens directly.
An information board about SHG with pictures would also be a welcome addition!
Alpha1 Germany e.V. would like to create a new book with patient stories. They also request that anyone with information about the beginnings of the Alpha1 association please send it to the group leader or the board by mid-June 2021.
Our virtual evening was rich in content, and many personal matters concerning the Alpha1 liver study and prolastin substitution were addressed. This led to a lively exchange of ideas, with advice and support offered. A vibrant discussion permeated our evening.
Finally, Peter Hübner suggested that the next meeting in August should be held outdoors or in a restaurant. The prerequisites being that... „Allow the "corona rules" that will then apply.
All group members will be involved in the decision and informed promptly.
Have a great holiday and stay healthy, all Alphas!
Signed: Petra Netzel
