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