On 25 August, Moving Forward organised a digital gathering on the topic of testing negative for Huntington’s disease. Two people shared their personal stories about what it was like to discover the disease in their family, go through the testing process and dealing with a negative test result.

A total of 12 people participated in the conversation. After the stories were shared, we opened the floor for questions and reflections from the participants. Several attendees also chose to share their own thoughts and experiences.

An important part of the discussion was about the follow-up that is in place after genetic testing. Many feel that they are alone when the test results come, and that there is a lack of information about where to turn for support and guidance afterwards. Several also described how challenging it can be to talk openly about Huntington’s disease in the family when you yourself have tested negative – both because you do not feel that it is ‘your own story to tell’ and because you may be afraid to say anything about family members who do not want to be open.

Despite the difficult topics, the gathering was experienced as a safe place to put into words experiences and feelings that often remain unspoken. The participants highlighted important issues that we must take with us in our work, and we are grateful for both the honesty and the commitment that emerged in the conversation.

We at Moving Forward would like to express our sincere gratitude to those who shared their personal stories – it takes courage and openness to put such experiences into words. We are also very grateful to everyone who participated in the session. Together, we are creating a community where it is possible to share, listen and learn from each other.