Dear parents, dear people affected, dear KCNQ2 community,

after the first 5 years of hard-working, exciting and successful association work, we are now going into the next round with new drive!
The association KCNQ2 e.V. is reorganising itself and is starting the year 2023 with a new board of directors. We now have a trio that will guide and accompany the association through the gruelling life with KCNQ2.
Sebastian Bethge, as founder, continues to take over the 1st Chairman position. At his side, Eva Lünenschloß and Christian Kammel are now working on exciting topics. They share the 2nd chairman position. We are totally grateful and happy that the three of them are taking over the leadership and that the association can continue to be there for all affected families.

We are also very happy about the new active members. In the same way, they take on important association tasks and thus contribute to reducing the workload. Some of the tasks of the association have been redistributed and we are excited about the fresh wind and the great ideas!

It is very close to our hearts and therefore counselling affected families is a very important (if not the most important) task. Especially in the first weeks after the birth – when everything is new and nerve-wracking anyway – the diagnosis with its consequences comes as a full-blown storm. We want to be a small anchor and a contact point.
We give an insight into life with KCNQ2, offer advice on a wide range of topics and have built up a large network.
Are rehabilitation resources needed? Is help needed with applications? Who is doing research on the genetic defect? What therapies are recommended? What is the situation in other countries/associations? What happens with donations? How do I become a member?
In addition, the Facebook parent group offers a safe place to ask burning questions, to get emotional support and to realise: Hey, I’m not alone!

We are looking forward to the 6th year of the association with all its tasks and challenges!
We are looking forward to lovely encounters, more new active members. We look forward to new tips and tricks for everyday life with our little and big KCNQ2 fighters. We look forward to children’s laughter and many beautiful moments.

Love,
the team from KCNQ2 e.V.