There's still more to come...

Gabi Niethammer, as appeared in Alpha1 Journal 2/2025.

Dear families,

It's time to focus more on our youngest, smallest, and youngest Alphas again. As the contact person for families with affected children and young people (including those with mild cognitive impairment), I'd like to share what we have planned for the near future:

• The SHG KIJU is launching as a purely virtual self-help group and is intended for all German-speaking families, thus also targeting families from Austria and Switzerland.
• I'm setting up a dedicated email list for this purpose, which I hope will continue to grow. You'll receive relevant information and invitations here. Do you have interesting tips, experiences, or memorable stories that might interest everyone? Write to me at shg.kiju@alpha1-deutschland.org and I'll check if it would be beneficial for the group.
• Would you like to connect with other families and find them in similar situations? I'd be happy to prepare a questionnaire that you can fill out if you're interested, so we can connect with other families if needed. Of course, your data will only be shared with your consent.
• On Tuesday, January 13, 2026, at 8 p.m., a virtual meeting will take place via Zoom. Dr. Alexander Weigert and Dr. David Katzer from the University Hospital Bonn will give a brief presentation on interesting facts about the genetic defect, introduce their important Alpha1 Children's Registry, and answer all your questions. If desired, the evening can also continue without medical support, allowing you to use the time to get to know each other better.
• At our Alpha1 Information Day on April 25, 2026, in Bad Wildungen, a two-hour workshop focusing on children and adolescents will take place in the afternoon. This workshop will be led by Dr. Marie Korell and Dr. Eva-Doreen Pfister, both from Hannover Medical School. Dr. Korell, a resident physician, is planning a translational research project on potential influencing factors on the course of Alpha-1 in children and adolescents.

Professor Rainer Ganschow from the University Hospital Bonn commissioned a short but worthwhile video featuring a patient's story. Thank you, dear Emely, for your courage!

I look forward to exchanging ideas with you all.