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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For the fourth time, Dr. Alexander Rupp hosted the Alpha1 Patient Day in Stuttgart. Approximately 130 participants attended and enjoyed a day of engaging presentations on various topics related to Alpha1. The team from RWTH Aachen University was once again on board, offering appointments for FibroScan liver scans and other examinations the day before. The event was very popular, but everyone had the opportunity to participate. The pharmaceutical companies exhibiting at the event were well-prepared and available to answer all questions. During the breaks, we were treated to excellent food and drinks and had ample time for discussions. Of course, representatives from the regional patient support group were also on hand to answer any questions, and the attendees were delighted to have Marion Wilkens join them.

Many newly diagnosed patients took the opportunity to make initial contacts and gather information, and many long-time attendees were delighted to see each other again. It was another wonderful event, for which we extend our sincere thanks to Dr. Rupp, all the helpers, and the sponsors.

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Hello, my name is Lothar Sailer, and I'm Heike Isensee's husband. My wife has Alpha1 (PIZZ), and I consider this a "shared responsibility." I myself am fortunate to be healthy. I do a lot of sports, play music, sing (together with Heike) in a choir, and enjoy our time off in the caravan. As a father-in-law and grandfather, I'm also always there when help is needed.

Heike has been leading our regional group for several years now. I'm already involved with Alpha1 patients by regularly donating plasma and actively promoting it among my friends and colleagues – and I was also involved in filming the plasma donation video for the Alpha1 YouTube channel. Whenever possible, I also accompany Heike to events, acting as her driver and behind-the-scenes assistant, especially when she's not feeling well. I've even had to proofread some of her writing and contribute my own ideas.

I know most of the members of our regional group (or at least those who attend the events) personally and always enjoy seeing them again. Since I'm already involved, it only makes sense for me to offer myself as deputy – especially since I recently have more free time due to my phased retirement.

I'm looking forward to learning more about Alpha1 and attending as many events as possible. If Heike is unable to "take the lead" for health reasons, I'll gladly step in and am always available to answer questions from family members. After all, I know from long experience what it means to cope with an illness together with a partner.

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On September 23, 2023, the South German Patient Day took place in Stuttgart, and the rooms of the Sparkassenakademie were bursting at the seams with almost 150 participants. Both patients and their relatives took advantage of the opportunity to obtain high-quality information, meet new "alphas" (patients with liver disease), or see old acquaintances and exchange experiences. The tireless and friendly team led by Professor Pavel Strnad from RWTH Aachen University had once again converted two event rooms into examination rooms. Liver and lung examinations had been conducted non-stop since the previous day. In fact, all appointments were completely booked! A huge thank you and much appreciation goes to the entire team at RWTH Aachen University.

Following the information session for physicians on Friday evening, the patient day began early Saturday morning at 9:00 a.m. with a warm welcome from Marion Wilkens (Alpha1 Germany e.V.) and Dr. Alexander Rupp (Pulmonology Practice at the PiZ Stuttgart Center, Alpha1 Center), who once again played a key role in organizing the event. Reliable and perfect support in planning and execution was provided by Ms. Melanie Hopf (WK Continuing Education); she was, once again, the event's guardian angel.

Many exciting and important presentations followed. Professor Greulich from Marburg, for example, spoke about what actually characterizes rare genotypes, what such a diagnosis means for the course of the disease and therapy, and how it is possible to detect such rare genotypes more frequently through increasingly better examination methods.

Marion Wilkens and Heike Isensee (from the Stuttgart region self-help group) spoke about the purpose and activities of the patient organization and the regional self-help groups. There are many aspects that make regional and supra-regional group work meaningful and important.

Dr. Psoma from the Robert Bosch Hospital in Stuttgart reported on the treatments that are common or possible for COPD and pulmonary emphysema. Among other things, she explained the combinations of different medications, the frequently occurring additional illnesses (so-called comorbidities), and how to manage exacerbations.

Dr. Rupp's presentation on asthma and allergies once again highlighted the complexity of treatment and, above all, diagnosis for those of us with lung diseases. Careful listening, appropriate examinations, and sometimes even questioning previous diagnoses – there is much to consider on the path to the correct diagnosis and subsequent therapy.

Dr. Fromme from RWTH Aachen University reported on the possible liver changes in Alpha1, and on the risk of liver disease depending on genotype, lifestyle (e.g., alcohol consumption), and other risk factors. The primary measurement of liver stiffness is also important for prognosis. A lot of interesting information about an organ we don't feel at all…

Ms. Leitl from the Schön Clinic in Berchtesgaden addressed the topic of our physical activity – ideally, we should walk at least 7,000 steps a day. She explained the effects of various training methods and how the different muscle fiber types in our bodies react to exercise. Whether using an app, at the gym, at home, or outdoors – the exercise should be regular and enjoyable.

Mr. Köbler, a psychotherapist from Fürth, posed the question for his workshop: how are the family members actually doing, what challenges and burdens do they face in everyday life, and what resources make it easier to cope? Interest and participation were very high, and time was too short – perhaps there will be a follow-up next year?

Dr. Heinemann from Stuttgart is a specialist in, among other things, vaccinations, and he had prepared a wonderful "roadmap" for us lung patients, outlining which vaccinations are important for us. He explained very clearly how the vaccines work and encouraged everyone present to take another look at their vaccination records and to ask their family doctor about any missing vaccinations.

Finally, Eveline Skarek presented her program on the topic of "Simply Breathe - Simply Sing." She allowed the participants to experience how the correct posture and exhalation lead to inhalation happening "by itself," and how the subsequent humming and singing of tones and songs allows the breath to flow and lifts the spirits.

As you can see – lots of completely different information in a single day!

During the breaks, participants had the opportunity to exchange ideas, gather information at the pharmaceutical industry booths, learn more at the Alpha1 Germany booth, or simply refresh themselves.

All of this was made possible financially by the pharmaceutical companies present. Their employees on site were, as always, helpful, friendly, and available to answer any questions. Many thanks to Grifols Germany, CSL Behring, GSK, AstraZeneca, and Sanofi-Aventis Germany for the fantastic opportunity to hold such an event.

A huge thank you to Dr. Alexander Rupp, the initiator of this event. What began many years ago on a small scale in his own practice has now become a major Alpha1 event, attracting patients who sometimes travel long distances. Thanks also to the other organizers – we are all already looking forward to the next South German Patient Day in Stuttgart on September 28, 2024.

Dr. Heike Isensee

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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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Saturday, June 24, 2023; 9:00 AM – 1:30 PM

Hotel Pullman Stuttgart Fontana
Vollmoellerstraße 5
70563 Stuttgart

Further information can be found in the attached flyer (download). Flyer_Alpha1 Patient Day_Stuttgart_June 24, 2023

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Appointments for FibroScan and lung function tests (Aachen University Hospital) were fully booked, and the flow of visitors was well managed. Several pharmaceutical companies were also present with their information booths (and, of course, financial support).

All in all, Dr. Rupp (Pulmonology Practice in the city center of Stuttgart) and the co-organizers put on a fantastic event, and the participants were thrilled. A huge thank you to everyone who made it possible, and see you next year! (Save the date: The next South German Patient Day will take place on September 22nd and 23rd, 2023.)

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