Director: Gabi Niethammer
contact
E-mail: SHG.KiJu@alpha1-deutschland.org
For details on upcoming SHG events, please refer to our [website/document/etc.]. Events calendar.
The virtual SHG KiJu introduces itself
In 2003, after the birth of our second child, our world was turned upside down when we received the diagnosis of Alpha-1 Antitrypsin Deficiency, or PiZZ. A genetic defect that attacks the lungs and liver? What could that possibly mean? Keywords like 'incurable', 'destroyed lungs', and 'early death' swirled around the internet and terrified us.
To counteract this, I joined Alpha1 Germany and served on the board for 18 years. One of my main focuses was advising families who shouldn't have to go through what I did, feeling so alone and helpless in the early 2000s.
A new component is the establishment of a virtual children's and youth group, which is aimed at all German-speaking families and which I am happy to lead. Here, everything revolves around topics related to our children and teenagers. We plan to meet online twice a year with the support of pediatricians and twice a year in person, just among ourselves. The goals are exchange, information, and networking.
Please write to SHG.kiju@alpha1-deutschland.org if you would like to be added to the mailing list with your email address.
Heartfelt
Gabi Niethammer
