Alpha1 Germany eV.

Alpha1 Deutschland eV has been supporting patients with alpha-1 antitrypsin deficiency (AATD) and their families since 2001. In our current special journal, we focus specifically on the youngest affected individuals and offer a wealth of information that is both informative and entertaining.

The special journal, a supplement to the regular issues, The journal, published twice a year and free for members, covers a wide range of topics specifically relevant to parents of children and young people with AATM. From the association's pioneering work and educational resources for all age groups to current projects at the Alpha-1 Children's Center in Bonn, the journal offers valuable insights.

The journal also provides insights into the Alpha1 Children's and Youth Day 2023, which offered both informative and entertaining elements. Furthermore, new therapeutic options for itching in advanced liver disease are presented.

The special journal is available as a digital download:

First virtual Children's and Youth Day on October 31, 2020

Gabi Niethammer

Due to the pandemic, we organizers had to switch from planning our beloved "real" Children and Youth Day to a virtual event this year. No easy task, since the gathering of families is precisely what makes these special information days so unique. How could we recreate that atmosphere online?

It was a great pleasure that Dr. Eva-Doreen Pfister, a very experienced speaker from the MHH, had already agreed to be our speaker at the KiJu Day planned for October 31st, 2020 in Hanover – and how fortunate that she was familiar with recording her presentation online in advance.

To avoid any unpleasant surprises, we uploaded the video to our YouTube channel the evening before and were surprised that it immediately received a good 30 clicks.

Right on time at 10 a.m. on October 31st, 2020, we started the online seminar with a short introduction and then handed the microphone over to Ms. Pfister. For a good 50 minutes, she explained the connections and effects of AATM on children and adolescents in a clear and very interesting way. The number of clicks climbed to 85 – what a great success!

Parents had to register in advance for the subsequent Q&A session to ensure a safe and confidential environment. With great thanks to Ms. Pfister, we opened the chat with a brief introduction to the association. Afterwards, the parents asked our doctor questions for a good hour, which she answered thoroughly and clearly. You can also find the link to this on our YouTube channel below Ms. Pfister's video.

The general consensus was that it was good to at least meet again online, or even to get to know each other. Ms. Pfister's presentation was very well received, and the subsequent Q&A session left the 18 registered participants satisfied and well-informed.

A mother would like to start a chat via the Telegram messaging service. If you would like to participate, please send us an email with your mobile phone number to kiju@alpha1-deutschland.org. We will then forward it.

Of course, we're eager to meet in person again soon, but until that's possible, online seminars are a really good alternative. Therefore, we're considering holding another online seminar in the first few months of next year before we can – hopefully – start planning a children's and youth day in Bonn. We're thinking of a joint project with Prof. Rainer Ganschow, University Hospital Bonn, and Dr. Pavel Strnad, University Hospital Aachen, at the end of April.

Dear families, stay healthy and well, yours truly, Gabi Niethammer

Alpha1 Children's and Youth Day 2018 in Gera: A varied and informative program for young and old

Gabi Niethammer, as published in Alpha1 Journal 2/2018

This year's Alpha1 Children's and Youth Day took place in Gera with 34 parents and 32 children and teenagers between the ages of almost one and 16. Many were delighted to see each other again, and the children and teenagers in particular quickly bonded. It's wonderful to see the youth so actively involved in the club, showing us the way forward.

While the Alpha Kids enjoyed supervised crafts and games together on Friday afternoon, the Alpha Teens, with the help of our member Miriam Butke, organized an Alpha1 quiz, posing exciting and unusual questions to the parents about the genetic disorder. The answers weren't easy at all, and the results on Saturday evening showed that there's still a lot to learn. The group even made a prize for the winner – all in all, a fantastic event!

On Saturday, the children and teenagers went to a youth center. There, they enjoyed table tennis battles, billiards, and foosball games, cooked together, and played age-appropriate video games. In the afternoon, the Alpha Teens went laser tagging, while the younger ones had fun climbing. And what did we adults do during that time? After the introduction to the work of Alpha1 Germany on Friday, Saturday's presentations focused primarily on the topic of liver disease in children. Three distinguished speakers informed us about the genetic defect and delved into the world of research.

Dr. Steffen Reinsch from Jena competently explained the connections of the AATM to us.

We even flew in Professor Antal Németh, a doctor from Stockholm. He has been studying the genetic defect since the late 1970s (not long after the disease was discovered by the Swedes Laurel and Eriksson) and brought us some interesting case studies.

Prof. Sabina Janciauskiene came together with Dr. Nils Jedicke from Hanover and took us on an exciting research journey.

I was impressed by how well the audience managed to follow two lectures in English with only a few translations, which is not easy due to the technical language.

The children's and youth day was rounded off by lovely evenings in the Novotel's winter garden, crowned by the musical accompaniment of our member Markus Baltensperger, which we have come to love so much.

Dear friends, we'll see each other again in two years for Children and Youth Day. It will probably take place in Hamburg, and I'm already looking forward to it.

Sincerely, Gabi Niethammer

Published in Alpha1 Journal 2/2018.

Overview of the lectures

• Dr. Steffen Reinsch: Alpha-1 antitrypsin deficiency in children and adolescents – an overview from a pediatric perspective
• Prof. Antal Németh: Alpha-1 Antitrypsin Deficiency: Liver Disease in Childhood
• Dr. Nils Jedicke: Liver involvement in alpha-1 antitrypsin deficiency – a forgotten disease?
• Prof. Dr. Sabina Janciauskiene: Development of therapies for alpha-1 antitrypsin deficiency

Alpha1 Children's and Youth Day 2016: An event for young and old

Alpha1 Germany eV.

71 members and 54 children and young people from all over Germany followed the invitation of Alpha1 Germany and met on November 18th in Düsseldorf.

After extensive preparations, Ms. Wilkens and I were delighted to welcome 71 members and guests, as well as 54 children and young people between four months and 17 years old, to Düsseldorf on November 18th. What a large group – we were thrilled and overwhelmed! Families traveled from all over Germany, Switzerland, and Austria to learn more, get to know each other, reconnect, support one another, and talk with the speakers.
While we adults discussed and talked to each other on Friday after the club's presentation, the children next door had a lot of fun: the younger ones played and made things like small bird feeders, while the older ones were trained in self-defense.
On Saturday, the children and teenagers went on various day trips, which took them to an indoor playground, a zoo, a climbing hall and a laser tag hall.

We adults were free to concentrate fully on the three renowned speakers. Many questions were asked, discussions were stimulated, and helpful tips were given – it was very informative and never boring for a single moment.

And the best part? In the conference room, the children were not only present theoretically – as a topic, so to speak – but right in the middle of things: several parents with their babies and toddlers had enough space in the back of the room to focus on both their little ones and the lectures and discussions.

A special thank you goes to our member Markus Baltensperger! Not only did he record the presentations flawlessly as a sound engineer, but he also delighted us with his singing accompanied by guitar, thus sweetening our breaks.
The weekend was rounded off with pleasant evenings in the restaurant, filled with relaxed and engaging conversations, while groups of cheerful children roamed the hotel together. It was only fitting that the hotel staff later assured me they had been somewhat apprehensive about such a large group of children, but were pleasantly surprised.

Keep it up! See you again in two years. I'm already looking forward to it… Gabi Niethammer

Published in Alpha1 Journal 2/2016.

Overview of the lectures

• Dr. Rüdiger Kardorff: Alpha-1 antitrypsin deficiency in children and adolescents – an overview from a pediatric perspective
• Dipl.-Psych. Andrea Meiners: What makes our Alpha1 family strong
• Prof. Dr. Bruno Christ: Alpha-1 and the liver – deeper insights and perspectives

A summary of the presentations can be found in our Alpha1 Journal 2/2016.

Alpha1 Children's Day 2014

Published in Alpha1 Journal 2-2014

From November 22nd to 24th, 2014, Alpha1 Germany's Children's Day took place at the Novotel in Erlangen. The number of participating children, aged 0 to 13, was record-breaking at 31. A total of 43 adults in Erlangen addressed this year's focus of Children's Day: the psychological and social impact of an AATM diagnosis on children, adolescents, and their families.

In the conference room, it quickly became clear from the presentations, discussions, and questions that young people with alpha syndrome and their parents face different challenges than affected adults. Even shortly after birth, when unusual symptoms appear in infants, parents are confronted with the question of when to test their baby. This also raises medical-ethical questions about a young child's right to privacy: Do parents have the right (or perhaps the duty) to make the decision for their children? Or are they thereby infringing on the child's "right not to know"? These are just some of the questions that continue throughout childhood and into adulthood: How do I tell my child? And, above all, when? And how? The children go to kindergarten, school, clubs, and build a circle of friends; in doing so, they grow up with the awareness that they cannot or are not allowed to do certain things, they also live with being different, and they must develop their own attitude towards it. And then there's puberty, an already turbulent phase for adolescents – an age when one feels invulnerable and when topics like illness or symptoms seem galaxies away from the everyday concerns of teenagers. At the event in Erlangen, it became clear that families and parents also have to deal with the worry that their child might experience stigmatization in their social environment because of the illness. When considering starting a family, those affected by AATM must also be aware of the hereditary component of the condition, as they could pass it on to their children. On the following pages of the journal, you will find extensive reports on how all these topics were addressed in Erlangen. Ultimately, the realization was that there are no easy answers to these questions, and no "right" or "wrong." Each family must ultimately decide for themselves how to deal with the illness and how to talk about it with their children. But affected families are not alone: Alpha1 Germany and its members support Alphas and their families with advice and practical assistance.

The idea of organizing an information day specifically for topics concerning children is proving contagious: Alpha1 Austria is planning a children's day in the Alpine republic next year.

The main participants of Children's Day, the children themselves, were thrilled with the full-day program on Saturday, which included a day trip to the Erlangen Youth Farm under the professional supervision of the Hamburg Games Gallery. The weather was perfect for the young Alphas, providing a pleasantly mild, rain-free day, so there were no limits to the fun and games outdoors. Whether crafting stars, playing foosball, or interacting with sheep, geese, or donkeys in the large petting zoo – there was something for everyone. As the saying goes, "A picture is worth a thousand words," so we'll let the photos of this eventful day speak for themselves on the following pages.

Published in Alpha1 Journal 2-2014.

Overview of the lectures

• Marion Wilkens: PiMZ – I'm just a carrier
• Dr. Rüdiger Kardorff: Liver manifestation of Alpha-1 antitrypsin deficiency
• Dipl.-Psch. Markus Nehrke: How do I tell my child?