Evening Without Borders: Open Conversations About Life and Huntington’s Disease
– Written by the Moving Forward team on April 1st 2026
On March 24 at 6:30 PM, an online session titled Evening Without Borders took place, connecting people across the Czech Republic and Slovakia. In a warm and open atmosphere, 20 participants came together to share experiences, listen, and speak openly about life with Huntington’s disease.
The main guests of the evening were two young women – Nikola and Gabriela. Each of them has a different life story, but they are united by a shared experience with Huntington’s disease. During the first part of the session, they engaged in a “20 questions” format, asking each other about their lives, emotions, and perspectives on the future. Afterwards, participants were given space to ask their own questions and openly discuss topics they were interested in.
The discussion was honest, authentic, and often very powerful. Both Nikola and Gabriela shared not only the difficult moments the disease has brought into their lives, but also its positive aspects – for example, how the experience has shaped them, strengthened them, and led them to a greater appreciation for everyday life.
A major topic of the evening was genetic testing. Both agreed that they do not regret their decision, while also emphasizing that it is a deeply personal choice. No one should be forced into testing – what matters most is having enough information and the freedom to decide. The importance of openness within families and relationships, as well as mutual support, was also highlighted.
Other topics included everyday life, a healthy lifestyle, fear of the future, and hope – especially in the area of treatment development. The evening was carried in a spirit of hope, sharing, and mutual understanding.
“I feel incredibly happy about the whole online meeting. It was a very pleasant experience, and we opened up to the community across the Czech Republic and Slovakia. We believe that openness is important, and we want young people to feel that they are not alone,” Nikola summarizes.
A sense of belonging was one of the key outcomes of the evening. Participants could realize that their feelings, fears, and experiences are shared by others. This created a safe space where it was possible to speak without prejudice or fear.
The event was organized as part of the Moving Forward project of the European Huntington Association, in cooperation with the Czech Society for Huntington’s Disease and the Slovak Society for Huntington’s Disease.
We had 44 people registering in the session, of whom 35 were family members. It is of note that 24 people who registered in the session indicated that they were attending an HD event for the first time. This shows we were able to reach new people and gives us a clear indication about the interest raised by this session, which is great!
The goal for the future is to continue creating space for sharing, connection, and open communication. Because that is where the strength lies – in knowing that no one has to go through it alone.