Author
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!
