Eva Lünenschloß
Board of Directors

I live with my family in the beautiful Ruhr region. My daughter was diagnosed with the KCNQ2 genetic defect in 2019.

I have been a member of KCNQ2 e.V. since 2021 and took on the role of 2nd chairperson in 2023. At the end of 2025, I was elected 1st chairperson, teaming up with Christian Kammel.

The association was my first point of contact after the diagnosis. They helped us find our way and we were able to ask many questions that we would otherwise have been left to deal with alone. I am delighted to be able to get involved in such an important and meaningful cause through the association.

My responsibilities in the association include the following:

  • Working with the board team to structure and develop the association and expand its networks
  • I want to raise awareness of this rare genetic disorder and I support and advise affected families.
  • I plan and coordinate various events and activities to involve members and promote the association’s goals.
  • My goal is to successfully lead the association and create a committed community.

If you have any questions or suggestions, please feel free to contact us at info@kcnq2.de.

 

Christian Kammel
Board of Directors

I live with my family in the beautiful Wetterau region, north of Frankfurt am Main. Eight weeks after his birth in December 2020, our son was diagnosed with the genetic defect KCNQ2.

In 2023, I was elected vice-chairman. Since the end of 2025, I have been chairman, together with Eva Lünenschloß.

Our family found valuable support and information about this rare genetic defect in the KCNQ2 association. This experience motivates me to volunteer and actively participate in the association to help other affected families and support research.

My responsibilities within the association include, among other things:

  • I am committed to defining short-term and long-term goals for our association.
  • I am the contact person for members, partners, and the public. My goal is to create open doors.
  • I keep members up to date on news and developments within the association and ensure that everyone is always well informed.
  • I represent the concerns of our association to external bodies and help to ensure that we are perceived as a strong community.

If you have any questions or suggestions, please feel free to contact us at info@kcnq2.de.

 

Björn Stavermann
Member

I live with my family in southwestern Lower Saxony. My son, who was born in November 2019, was diagnosed with the KCNQ2 gene defect in April 2020.
I know how stressful the diagnosis of ‘KCNQ2’ is for families. That’s why it’s good to have points of contact and people to talk to who have already been through similar experiences and can offer advice and support. I am involved in the association so that I can pass on this help and support to affected families.
My responsibilities as treasurer of the association include the following:
  • Keeping accurate records of all the association’s income and expenses
  • Managing the association’s cash and bank accounts
  • Documenting and managing donations
  • Preparing regular financial reports
  • Informing members about the association’s financial situation and the use of funds

 

Susann Stavermann
Member

My son was born at the end of 2019 and has a very rare genetic disorder called KCNQ2. The diagnosis in spring 2020 not only changed our lives, but also sparked my desire to help other affected families and raise awareness of this genetic disorder. I would like to share information and support so that other families do not have to face their situation alone. Together we are stronger and can give each other courage and hope!

My responsibilities within the association include:

  • Coordinating the interfaces between IT (website and newsletter), scientific communication, and patient representation.
  • Creating and writing information for the website, regularly updating website content, communicating with IT
  • Providing technical support for the association’s official social media channels, in particular Facebook and Instagram.
  • I advise affected families after diagnosis and give them initial guidance.

 

Aila Coulmann
Member

As a volunteer with KCNQ2 e.V., I am responsible for Scientific Communications & Patient Advocacy. In this role, I work closely with families, researchers, and clinicians to share knowledge on KCNQ2-related disorders, strengthen the community, and highlight scientific progress.

My activities include:

  • Co-authoring the association’s scientific newsletters to make the latest research accessible to families and professionals
  • Raising awareness of KCNQ2-related disorders and their impact on families
  • Supporting fundraising initiatives to advance research and therapy development
  • Connecting families, clinicians, and researchers within the KCNQ2 community
  • Contributing to projects, campaigns, and resources that strengthen patient support

 

Ines Mürle
Member

When our youngest child was born in the summer of 2019 with the rare genetic defect KCNQ2, the world stood still for a moment…
I am the mother of three sons and we live in the Black Forest.
It was not easy for me to accept the diagnosis and integrate the special needs that the genetic defect entails in his case into our everyday life. Since I have been a single parent since 2022, it is often very challenging for me. But despite all the challenges, we still have a wonderful time together.
Even if such a diagnosis initially shakes everything to its foundations, you can find a way to come to terms with it. The conversations I had here at the association through counseling helped me a lot at the time. That’s why I now want to take on this task and give families space to address their questions, concerns, and fears after receiving this diagnosis and provide them with information about the genetic defect. Perhaps this will enable us to take the first step toward looking to the future with a more positive outlook. Together, we are less alone.

My tasks at the KCNQ2 e.V. association are:

  • I advise affected families and support them on their individual journey. Together with the family, I develop ways to tackle challenges with confidence.
  • I take on smaller tasks that arise in the day-to-day running of the association. I am committed to ensuring that our activities run smoothly and to actively supporting the team.

 

Andreas Kreuzmair
Member

I live with my family in Erding, Bavaria. My son was born in 2019 and was diagnosed with a KCNQ2 gene defect approximately three months after his birth. My personal involvement shapes my view of the disease and is also the basis for my commitment to the association.
KCNQ2 is a very rare disease that is hardly known outside of the immediate community. This is precisely what motivates me: if we as affected families do not take action ourselves, share information, raise awareness, and support each other, then no one else will do it for us. It is important to me to spread knowledge, get people involved, and help build structures that help affected families today and enable KCNQ2 patients to have a better life in the future. I place particular emphasis on working closely with scientists and pharmaceutical companies to support research activities and enable long-term progress toward alleviating or curing the disease.

My responsibilities in the association include the following:

  • I am the secretary of KCNQ2 e.V.
  • Management and maintenance of internal documentation and protocols
  • I represent the association in international networks, associations, alliances, and exchange formats
  • Conception and implementation of a merchandising project to strengthen visibility, identification, and support for the KCNQ2 community