Sunshine, blue skies, two punts, and lots of friendly people—what more could you want? On June 13, 2026, we met for our privately organized punt tour. Beforehand, we had a communal breakfast to settle in and get to know each other better. The trip on the Enz River was informative and scenically stunning, and gusts of wind added a touch of adventure.

In the afternoon, thanks to the financial support of CSL Behring, we were able to hold our regional meeting in the old railway carriage of the Steig 1903 restaurant. We listened to a fascinating presentation about the vagus nerve by Ms. Bolesch, were able to do relaxation exercises, and ended the day with a pleasant meal and many good conversations.

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Vaccination protects against influenza, Covid, pneumococcus, and RSV - CSL Patient Day in Mainz

By Herbert Rude

Vaccinations have once again become a topic of discussion, especially since Robert Kennedy, a notorious vaccine skeptic, has been at the helm of the US Department of Health and Human Services since last year. "For people with alpha antitrypsin deficiency, however, the benefits far outweigh any potential harm," stated pulmonologist Camilla Lüttecke-Hecht at the Mainz Patient Day in May, which was hosted by CSL Behring as part of its regular rotation. She recommends alpha-negative vaccinations against influenza, pneumococcus, COVID-19, and RSV. "Because all of these diseases can severely damage the lungs," the doctor explained.

In severe cases, the coronavirus led to thrombosis or blood clots in the lungs, which paralyzed gas exchange. RSV can cause veritable cell debris in the airways, and pneumococci fill the alveoli with pus and damage the cilia in the bronchial system. True influenza can even trigger a so-called superinfection. In this case, bacteria also colonize the airways, which are already burdened by the viruses. "The 1918/19 flu pandemic claimed more lives than the entire First World War," says Lüttecke-Hecht. Estimates suggest up to 100 million victims.

While no vaccine can prevent disease 100 percent of the time, protection against influenza is between 40 and 60 percent, and protection against pneumococcus between 60 and 75 percent. Vaccinations offer 80 to 90 percent protection against RSV and COVID-19. "However, viral loads are much lower in infected individuals than in unvaccinated people, and the immune system fights the disease more quickly," says Lüttecke-Hecht.

Opinions that one can protect oneself against these diseases in this way, or that vaccinations themselves cause the infections, are wrong, she adds. "We can't vaccinate against a disease," the physician states. The problem is that many vaccinations are administered in the fall, when there are already many cold viruses circulating. "Some people already carry these viruses when they are vaccinated," she says. The incubation period, the time between infection and the onset of symptoms, then means that the cold only breaks out after vaccination and is then quickly mistaken for the flu.

And to avoid the viruses, one would essentially have to wall oneself off for three months, the pulmonologist continued. The viruses or bacteria are transmitted through droplets, for example, during conversation, making avoidance virtually impossible. Furthermore, the immune system needs to be constantly stimulated against viruses and bacteria. "We are still seeing the consequences of wearing masks during the coronavirus pandemic," she said. The immune system functions by having T cells in the body remember pathogens and sending out B cells, or phagocytes, to fight them. "Actually, we even need the illness to stay healthy," the doctor explained. But this is where vaccinations come into play.

The vaccinations provide the T-cells with blueprints or proteins from the viruses, "without transmitting the disease," as she emphasizes. Because children don't yet have antibodies, vaccinations are therefore particularly important for them. On the other hand, the immune system weakens with age. "That's why vaccinations are important not only for children, but also for the elderly and at-risk groups," she says.

For pneumococcus and RSV, a single vaccination is sufficient according to current knowledge. Annual vaccinations are necessary against influenza and also against COVID-19 because the viruses are constantly changing.

The next Mainz Patient Day will take place on November 14th. It is being organized by Grifols and will focus, among other things, on the Alpha-1 Centers. Further details will follow later on the website.

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here

or copy into your browser: https://lecture.senfcall.de/shg-ox0-y5a-msy

No registration required, just come in!

Yours truly, Udo

The online tool is senfcall:

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Afterwards, we enjoyed a delicious Christmas lunch – of course, our vegan participants were also well catered for. It was a thoroughly enjoyable and entertaining afternoon that – as so often happens – ended far too quickly.

Our next meeting is already scheduled: the large general assembly on April 24th and 25th, 2026 in Bad Wildungen. We're already looking forward to it!

Finally, all that remains for me is to wish you all a calm and peaceful end to the year – Merry Christmas, a Happy New Year and a healthy, airy 2026!

Regards, Lothar

The post Jahresabschlusstreffen der SHG Weser-Ems, 01.11.25 appeared first on Ihr Online Portal für Mitglieder und Interessierte.

I am proud to report that we have succeeded in scheduling our next meeting.

                                           Dr. Heinz Steveling

for a presentation about Emergency management for Alpha 1 patients to win.

Dr. Steveling was for many years the senior consultant for pulmonology at the Ruhrland Clinic Essen. He trained many young doctors there and further developed the clinic. After his retirement, he continued to contribute his expertise to the clinic for several more years. He is now enjoying his well-deserved retirement.

Many of you probably know Dr. Steveling from our Alpha 1 members' meetings.

You really shouldn't miss this event. It's always better to be well-prepared than to be disappointed later. So mark this day in your calendar and please register. numerous, soon and binding to.

It's worth it – promised.

Date: July 5, 2025 – 2:00 PM – Chocolate Hotel Voss Westerstede

Please register by email or WhatsApp:

LRN1@gmx.de   or 0177 / 780 7800

Lothar

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On March 11, 2025, the time had finally come: the groups from Brandenburg and Berlin met again at the AOK Nordost building in Berlin after more than half a year.

It wasn't just the joy of seeing each other again that was great. There was a lot of news to share, not only about the small and large challenges with AATM. Petra also reported on her visit to the 25th anniversary celebration of the HAEMA location in Berlin Hellersdorf, where she met, among others, the Governing Mayor, Kai Wegener.

The highlight was the highly informative presentation by Ms. Spaja from air-be-c on inhalation and long-term oxygen therapy. In addition to the products and physiological background, she provided numerous insights into the framework for prescription and care. The planned timeframe was significantly exceeded, and it was worth every minute!

Other groups were also invited to participate online, and several did. This fostered exchange between the groups and the speaker. The groups are already looking forward to the next meetings.

Vicky and Peter Hübner

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Patient during a lung function test.

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The year 2023 was finally a year with many highlights again.

After almost 3 years of the Corona pandemic, events were able to take place again this year.

First up was our big anniversary celebration, including the members' meeting and information day, in Bad Wildungen. The whole weekend was a huge success. The information day and members' meeting provided a wealth of information about research and other topics. The subsequent Saturday evening 20+2 anniversary celebration was simply fantastic. Many thanks to the organizers!

Our Alpha1 group work is also slowly returning to normal.

Our first group meeting took place on July 22, 2023, and the second on September 23, 2023. Both meetings featured lively discussions on current topics. We'll see what ideas we come up with for next year! Lunch was also a must, and as always, we were treated to a delicious meal at our usual venue. After about three and a half hours, we concluded the meetings and agreed to meet again as soon as possible!

In order to keep this promise, we have planned the following dates for 2024:

1. 23.03.2024
2. 29.06.2024
3. 19.10.2024

As always, our meeting will take place at the

Waldhaus an de Miälkwellen
Grevener Straße 43
The event will take place in 49549 Ladbergen.

Start: 11:00 a.m.,
End: approx. 2:30 pm

Please register, if possible, at least one week in advance. This helps us estimate the number of participants and inform our venue. Of course, later registration or spontaneous participation is still possible.

We look forward to seeing you and wish you all the best until then, and stay healthy. Please feel free to contact us if you have any questions.

Warm greetings from the beautiful Münsterland region

Birgit and Heinz

We wish you a Merry Christmas and a Happy New Year 2024!

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Some Alpha1 self-help groups have already reported on their AlphaCare Regional Day 2023.

We held this regional meeting on September 21st in the AOK Nordost administration building, on the 14th floor. A sunny day with the best view of Berlin from above.

The guests and our members were thrilled, resulting in a very active exchange of ideas.

A group photo was a must. A few members are missing, but that's what happens when you arrive late, and some were also out sick.

The topic of our second in-person event:    AATM Sleep and Resilience

We welcomed Dr. Thomas Köhnlein, lung specialist from the Teuchern specialist center.

The conference room had two large screens, and the movable cameras focused on the person speaking. The organization of being able to use such a room for our event was fantastic. We would like to express our sincere thanks to AOK Nordost for this.

Dr. Köhnlein was able to communicate and explain things to us using the first screen, and on the second screen we saw the illustrations and pictures on the topic.

It was fascinating to learn what lies behind the word "resilience," especially in the context of sleep apnea. Dr. Thomas Köhnlein presented the information on this topic so clearly and concisely that many questions arose.

The event was simply commendable, and the lively discussions continued enthusiastically even after Dr. Thomas Köhnlein had left the room.

A successful day, and the members expressed a desire for further in-person meetings, also with AlphaCare, the patient service program from Grifhols.

Signed: Petra Netzel

The post Infos der Alpha-1-Selbsthilfegruppe (SHG) Berlin-Brandenburg, Treffen vom 21.09.23 appeared first on Ihr Online Portal für Mitglieder und Interessierte.

At the invitation of CSL Behring, we were able to meet for an interesting event in Stuttgart-Vaihingen on June 23rd. Almost 30 participants didn't want to miss the opportunity. Dr. Rupp (PiZ Stuttgart) explained the meaning behind the many values obtained during lung function tests and blood work, essentially saying, "Explain my values to me." There was ample time to ask all the questions that one doesn't usually get around to during a typical consultation.

Following this, Ms. Ines Schneider, in her role as a coach, was able to explain very clearly how we can find, activate, and utilize our inner resources to better cope with the burdens and stress that the illness brings. Through exercises and participation, we realized that the tips actually work – fantastic!.

It was lovely to see so many familiar and new faces again, and we had a very nice and exciting day.

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