Katrin Fell, as appeared in Alpha1 Journal 1/2025.

For many years, Markus Baltensperger from Hamburg has supported our members' meeting and information day with his technical expertise. You can read more about what this support entails and everything he does for our Alpha family in the following interview.

Because he's not just a technician, but a true musician through and through. We've had the pleasure of experiencing this firsthand – most notably at our anniversary celebration, where his musical accompaniment perfectly complemented the evening. We're therefore delighted to introduce you to Markus from a different perspective.

A1D: Hello Markus, we are very pleased to introduce you to our members and readers of the journal. What are you actually, a musician or a technician, or both?

Markus Baltensperger: First and foremost, I'm a musician, but since I trained in a technical profession that no longer exists – namely, automotive electrician – I have a relatively good technical knowledge. It always bothered me when I rented equipment and it didn't work perfectly. That's how I gradually acquired more and more of my own equipment and became completely self-sufficient. Now, many clients appreciate my skills as both a musician and an event technician because they get everything from one source.

A1D: You go far beyond the call of duty for us, how come?

Markus Baltensperger: I lived in Marion Wilkens' neighborhood and had her children as guitar students. At some point, I came across a club flyer and asked Marion about it. That's how I started out participating in events with live music and eventually took over the technical side as well.

A1D: Where and when can we hear your music again soon?

Markus Baltensperger: I've been meaning to make a new album for a long time now. I hope I can manage it this year, but I'm actually present on all platforms, like Instagram, Facebook, Spotify, Apple Music, Amazon Music, and so on. I also played on the new song by Nena's son, Samuel. I'm always collaborating with different artists and am open to new things.

A1D: What's it like for you to be involved in our information day? What all needs to be prepared?

Markus Baltensperger: The information day is, of course, quite a challenge at times, requiring a lot of technology and effort, and since I do it almost entirely on my own, I hardly get any breaks. The last three times I haven't been able to participate in the liver study because I simply didn't have the time. But I'm always happy when everything runs smoothly and most people are satisfied. With so many people present, it's not always easy to please everyone, but I do my best.

A1D: What would you like to tell us?

Markus Baltensperger: I find your event very professionally organized, and I don't know of any other club or institution where everything is so detailed and well thought out. There's always something new and inspiring at your place. I think it would be good for the patients or members to have something with music again, something that would allow them to escape into another world and perhaps focus on something else for a few minutes or hours.

A1D: Finally, allow me one more personal question. What do you like to do in your free time, if you have any?

Markus Baltensperger: I really enjoy traveling in my motorhome, where I often look for campsites that are located somewhere in nature and not in commercial areas. This allows me to recharge my batteries and find myself again.

A1D: … thank you so much, dear Markus, for taking the time to answer our questions so thoroughly. We look forward to continuing our collaboration – because we know what we have in you!

Alpha1 Germany eV, as published in Alpha1 Journal 2/2024.

A warm welcome to Dr. David Katzer and Dr. Alexander Weigert!

For the first time since we started appointing advisory boards, we immediately asked a tandem team if they would like to support us in our work.

We would like to introduce our new scientific advisory board members and warmly welcome Dr. David Katzer and Dr. Alexander Weigert for the area of children and registries. Both work at the Alpha-1 Children's Center of the University Hospital Bonn under the direction of Prof. Dr. Rainer Ganschow. You can read about their work for young Alpha-1 patients in the following interview.

A1D: Welcome to the scientific advisory board of Alpha-1-Germany and thank you for taking the time to join us in our mission and for introducing yourself to our members and readers of the journal here.

A1D: Why did you both become pediatricians?

Dr. Katzer: Through my doctoral thesis at the children's hospital, I quickly realized that children are very special patients. This impression was confirmed during subsequent internships, and I felt that it would always come easily to me to dedicate myself to the health and well-being of children and adolescents. The spectrum of cases, from newborns to young adults and from mild stomach aches to serious liver disease, makes the work incredibly diverse and challenging. And even though the patient is the focus, it's always essential to involve the entire family in their care.

Dr. Weigert: It was a happy coincidence. I was offered a student teaching position at the children's hospital. I enjoyed it so much that I completed part of my practical year at the hospital at the end of my studies. There was one moment when a child bumped into my heels on a toy car – in response, I showed him how the horn worked. That's when I realized: if I can play toy car at work, it can't be a bad place to work. To this day, I still find great joy in interacting playfully with children.

A1D: In Bonn, there are several projects that, among other things, affect children with alpha-1 antitrypsin deficiency, and you are involved in these initiatives. Can you tell us more about them and what the benefits might be for the families involved?

Dr. Katzer & Dr. Weigert: Our research group is working to advance research on AATM in childhood and adolescence. We believe that research, especially in rare diseases, should not be conducted in isolation, but rather requires collaboration and teamwork. This is one of the reasons why the Alpha-1-Kids Registry has become one of our key projects. With Germany's first digital and patient-managed registry, we are striving to gain a deeper understanding of the disease progression in children and adolescents, and to bring healthcare professionals, researchers, and, above all, families closer together. We have also established a well-functioning biobank. Many families of children and adolescents with AATM who are under our care allow us to collect small amounts of blood and store it in a biobank. This enables us, for example, to analyze parameters that could provide insights into the patients' expected disease progression.

A1D: Some of our readers attended the last Alpha-1 Germany Children's and Youth Day in Bonn, while others read the reports in our special edition. What has happened since then?

Dr. Katzer & Dr. Weigert: Most importantly, the Alpha-1 Kids Registry has been launched! We are very pleased that everything is working technically and that the registry is being well received by families. The willingness of families to provide us with their children's valuable data continues to impress us. Since its launch in March 2024, we have been continuously developing the app and welcome feedback and ideas for improvement or expansion. This year, we have raised awareness of the registry at several conferences and in professional journals – and thus, of course, also of the AATM, which, unfortunately, is still often considered far too late.

A1D: You will be leading the seminar for families with affected children at our information day in 2025 this afternoon. What can we expect there?

Dr. Katzer & Dr. Weigert: That makes us very happy! We hope to put together a seminar that is as informative as possible. We want to focus on a few key topics and be more receptive to questions from children, young people, and their families, rather than having doctors deliver "lectures" to patients. If this leads to an open discussion about all sorts of things, then we will have achieved our goal.

A1D: What would you like to achieve as an advisor to us, and what would you like to share with us?

Dr. Katzer & Dr. Weigert: First of all, we are thrilled with how well the AATM community functions. We have had the pleasure of getting to know a truly dedicated and warm patient association – please maintain this open, friendly, and supportive atmosphere. We hope to contribute to advancing collaboration between doctors, researchers, families, and patients.

A1D: If you like, tell us what you enjoy doing in your free time.

Dr. Katzer: In my free time, I spend as much time as possible with my wife and three daughters. We enjoy meeting friends, going on outings, playing games, and drawing. Because of my eldest daughter's chronic illness, I understand the importance of patient associations and self-help groups, and I am very pleased that we can support Alpha1 Germany.

Dr. Weigert: In my free time, I like to unwind on two wheels. Whether it's a mountain bike or a road bike – being active and surrounded by nature allows me to forget the stresses of everyday life for a while.

A1D: Thank you very much for the interview, Dr. David Katzer and Dr. Alexander Weigert. We look forward to joint projects, your expertise on the advisory board, and a better future for children and young people suffering from alpha-1 antitrypsin deficiency!

Nicole Scherhag, as appeared in Alpha1 Journal 1/2024.

Twenty-five years ago, I no longer wanted to spend Christmas in prison... to work there.

After studying social pedagogy, I spent the first years of my career working in a correctional facility. My main focus there was on supporting convicted violent and sexual offenders. It was an exciting and challenging job, but over time it also took its toll. And so I gave up my civil service position and made a change to a completely new field.

Since 1999, I have worked in the healthcare sector, addressing the issues that arise alongside medical problems and can make life very difficult for sick people. My focus is on the psychological and social consequences of illness—the questions that particularly impact the daily lives of those affected and often become acute precisely when there are changes in the medical field, unfortunately often when there is a deterioration in the patient's condition. "How do I cope with the psychological burden?", "Can I continue working?", "How do I obtain a disability card?", "I'm so scared, what can I do?" These are examples of questions that people might bring to me.

My career in medicine began with the establishment of the first counseling center for people with chronic kidney disease and their families at the University Hospital of Mainz. I worked there for two years as an employee on a research project. Afterwards, I became self-employed. Now, improving the quality of life for people with chronic illnesses and providing holistic care for those affected are my professional priorities, which I pursue with great dedication and passion. Over the years, I have expanded my expertise to include other areas. Today, I work in the following fields: pulmonary diseases, nephrology, oncology, cardiology, lipidology, neuromuscular diseases, and rare diseases.

My goal is the continuous improvement of psychosocial care for chronically ill people. To this end, I offer a wide range of seminars, train patient advocates, write patient brochures, moderate events, and advise chronically ill individuals and their families. Furthermore, I provide continuing education for physicians and nurses on my topics to raise their awareness and equip them with extensive referral knowledge, enabling them to quickly connect patients with the appropriate services.

I am firmly convinced that the life expectancy and quality of life of chronically ill people and their families depend not only on medical care but also heavily on successful psychosocial coping with the illness. This means the extent to which those affected and their families manage to absorb and mitigate the financial, professional, emotional, and social consequences of the illness. These burdens are immense and particularly challenging. In my opinion, the most successful approach to coping is through organized self-help, and therefore I am delighted to have been appointed to your advisory board. I am happy to contribute my knowledge and creativity and look forward to working together.

In my private life, I'm married and the mother of a 21-year-old daughter who recently left home. I enjoy reading, traveling, being around people, and spending time in nature. Sport is a welcome way for me to unwind.

Since I particularly enjoy working with children, I volunteer as a reading tutor at a primary school. I practice with the children once a week – a very fun, enriching, and rewarding task.

Alpha1 Germany eV, as published in Alpha1 Journal 2/2023.

Welcome, Birthe from Wuppertal!

What a momentous occasion! We, as a rare disease organization, are delighted to welcome our 1,000th member. Let's briefly return to the members' meeting; the graphic below shows what it looked like in May 2023.

959 members – steady growth, but 1,000 was still a long way off.
removed. On November 4th, the Patient Day took place in Essen (page 30). It was a very friendly gathering where we were once again able to present our work. Naturally, we mentioned that we are approaching the 1,000-member mark and explained why this is so important. It's not the prestige, not the personal success – although both are nice – it's the weight we gain in political and scientific circles. It gives us the clout and power to make a difference in the matters that are so important to us Alpha-1 patients. Shortly afterward, a woman came to our stand with a completed membership application. She simply said: "Then I'd like to contribute to reaching 1,000 members.".

Here is the greeting from our 1,000th member:

Dear Alpha1 community,
I'm Birthe from Wuppertal, and my heart was bursting with joy because I'm the 1,000th member of Alpha1 Germany e.V.! With my Crohn's disease, ankylosing spondylitis, Alpha-1, and psoriasis, I'm incredibly excited to stick with you through thick and thin. Marion, a heartfelt thank you for the refreshing conversation on the phone and the wonderful "heart" – a warm welcome that touched my soul. Let's laugh together, learn from each other, and above all, fight together. This isn't just about membership, it's about a large, supportive family. Here's to many moving moments and tons of energy!

Dear Birthe, thank you for your membership application; you are our 1,000th member! Congratulations! By the way, Birthe found us through our new Instagram account!

A big congratulations to our 1,000th member, Birthe!

Frieda Wilkens, as appeared in Alpha1 Journal 2/2023.

Hey

I'm Frieda, and I launched the Alpha1 Instagram account (@alpha1deutschland) in August. Instagram is known for being used primarily by younger generations, and that's exactly what we want to leverage – our goal is for more young people to find us as an organization and for us to raise awareness of Alpha-1 antitrypsin deficiency through social media. Please help us by following our account! I know this all too well myself. On my way to university in the mornings, it's unfortunately become almost automatic to check Instagram to see what's been happening with my friends and acquaintances in the last few hours. While I'm at it, I also take the opportunity to check out, for example, the Tagesschau account and get "meaningful" content – or, of course, Alpha1. A major advantage of Instagram is its incredibly user-friendly interface and the fact that it can be used casually, making it exactly what (hopefully) appeals to young people. I'm proud to mention that we already have at least one member who discovered the club solely through Instagram. Seeing this account grow is something I'm really looking forward to.

Posting the numerous events, newsletters, online appearances, and similar content from the club, and thus capturing them in a public "photo gallery," is a project I'm happy to implement. Because it's true: sometimes a picture is worth a thousand words.

Alpha1 Germany eV, as published in Alpha1 Journal 2/2023.

We would appreciate your support for our service hotline. As a reminder, this is our phone number, which we
Use on flyers, websites, and other materials. The phone number is free within Germany.
I am reachable. The important thing is that we can route this number to different landline numbers so that there's no downtime in case of vacation or illness. Until now, most calls have ended up with me. However, since the number of calls is increasing, it's becoming difficult for the board to maintain the high quality and length of these conversations, juggling meetings, travel, work (since some of us also have other jobs), and other commitments.

The callers are often newly diagnosed individuals or COPD patients who have heard about us through our patient library and are inquiring about where and how they can take the Alpha-1 test. These conversations can only be conducted by people with years of personal experience, and above all, they require sensitivity and a great deal of empathy. We are delighted to have our long-standing member Petra Objartel as a volunteer to support us on the phone.

THANK YOU Petra!

Leo E. Kröll, as published in Alpha1 Journal 2/2023.

Let's return to the Alpha1 information day held from May 5th to 6th, 2023 in Bad Wildungen. Those who were able to attend will confirm that it was a full, informative, and extremely helpful weekend. There were ample opportunities for information gathering, getting to know support services, and networking.

I would particularly like to highlight one offer that proved very helpful to me later on. I came across the Pneumo Factory information booth quite by chance and got into a conversation with the founders, Dr. Inga Jarosch and Tessa Schneeberger.

Both are research associates at the Research Institute for Pneumological Rehabilitation of the Schön Clinic Berchtesgadener Land/Philipps University Marburg and are active as speakers in the Working Group on Respiratory Physiotherapy, the Respiratory Therapist Training and the Heart LAG Training.

I was interested in the concept, and so I learned more about the Pneumo Factory. In short, it offers high-quality, non-drug treatment options for alpha-1 antitrypsin deficiency, delivered directly at home – under individual, professional guidance.

The aim is for the participant to become a competent manager of his illness by being provided with practical knowledge, respiratory physiotherapy self-help techniques and a training plan for strength and endurance training by a specialist, and to implement this independently in the long term.

The costs for the program are covered by CSL Behring
worn.

Unfortunately, the program wasn't yet offered in my state of Rhineland-Palatinate at that time, due to a lack of qualified staff. However, I left my contact information and put myself on the waiting list, as I was assured of a place in the program if staffing became available. To my delight, Pneumo Factory contacted me very quickly and put me in touch with Mr. Thomas Schmiediche, who would be guiding, supporting, and supervising me. He is a physiotherapist specializing in respiratory therapy and orthopedics. We met at my home shortly after our initial contact. He assessed my general condition and had me perform some exercises to establish a basis for future evaluations and assessments of potential improvements.

The therapist was a stroke of luck, as he was not only very personable but also highly competent and goal-oriented. I quickly discovered this, as he identified my shortcomings, weaknesses, and training needs in a short time. After more than an hour, he created a training plan for me, and we scheduled a video conference in two weeks.

Dr. Inga Jarosch and Tessa Schneeberger, as published in Alpha1 Journal 2/2023.

Most people know that physical training and knowledge of how to manage alpha-1 antitrypsin deficiency and COPD significantly contribute to a good quality of life. But how can effective, targeted training be integrated into everyday life? What simple tricks can help control and improve shortness of breath during exertion (and the fear of it)? And which exercises are best suited for each individual?

To optimize disease management outside of drug therapy, we have launched the PROMISE program, which is specifically designed for patients with alpha-1 antitrypsin deficiency.

What is PROMISE?

PROMISE is a personalized training and respiratory physiotherapy program for alpha-1 antitrypsin deficiency, offered by Pneumo Factory. The program aims to empower you to manage your condition effectively by providing non-pharmacological therapy components tailored to your individual needs. A training plan for endurance and strength exercises is created, which can be performed in your own home without the need for any equipment. Furthermore, essential respiratory physiotherapy techniques, such as pursed-lip breathing, are reviewed and taught, and practical information is provided on topics such as mental health, long-term oxygen therapy, and nutrition.

How long does the program last?

The program lasts a total of eight weeks. Sessions 1 and 5 take place directly at the participant's home, eliminating travel costs for patients while still allowing for personal interaction and adjustments to individual exercises. Sessions 2 through 4 are conducted via video conference with the therapist. All sessions are spaced approximately two weeks apart (to be arranged individually), allowing participants time to independently practice the new training plan. The long-term goal is for the training to be integrated into daily life and performed regularly on an independent basis.