Moving Forward presented at the Youth Meeting 2023 in Norway

– Written by the Moving Forward Team on October 4th 2023 

Every year, there is a youth meeting in Norway where young adults between 18 and 35 who come from an HD family can gather and bring their partners or family members if they want. This meeting takes place over a weekend full of presentations and activities for people to get to know each other better and increase their knowledge about several HD-related topics. This year the event happened in Sørlandet in Kristiansand. 

Siri Hagen Kjølaas, a young psychologist, presented her PhD work about growing up in an HD family “Who sees the children in the shadow of Huntington’s disease” and discussed the main findings of her project.

Ellen Blinkenberg spoke about presymptomatic genetic testing. Ellen is a doctor and specialist in medical genetics. She had an easy and understandable talk about how genetics works when it comes to Huntington’s disease. For those who wanted, there was also the opportunity for individual conversations with Ellen after her presentation.

Astri Arnesen, the President of the European Huntington Association, was at the meeting to talk about research. There is great interest among the younger generations from HD families in Norway to hear how research is going and how far it has come. Astri prepared a simple and family-friendly presentation about what is happening in HD studies and trials worldwide. Since it is often difficult to have reliable and accurate information about HD research in lay language, this was a very useful and informative talk that gave a better insight into what is going on and where we are heading.

Geir Viksund, Head of the Norwegian HD Association, was also at the meeting and talked about what is happening in the Association and what are the plans for the near future.

Julie Skarberg, the National Coordinator of Moving Forward in Norway, presented the project to the meeting attendees and gave us her feedback about that experience:

“I had the opportunity to present the Moving Forward project to this group. I talked about what Moving Forward is and what has been done so far in Norway and a bit about the road ahead. This is an exciting project, and it will be interesting to see what we can achieve here in Norway. I have shown the project website and what has been already translated into Norwegian. I have received a lot of positive feedback. Everyone is looking forward to seeing what we can do in the country and thought that the website is a good resource to get easy to understand information about HD research.” 

During the weekend, there were several social activities, the main one being a “farm fight” in the zoo. There were a lot of laughs and a high level of competition among the group. After the activity, everyone went out to eat at an Indian restaurant and the evening continued with board games at the hotel.

The meeting attendees are very grateful to Beate Almli Hagland and Ane Mygland for taking the time to arrange this and set up the program for the youth gatherings. They do a fantastic job and without them this could not have been possible.

As for the Moving Forward team, we could not be happier with this nice opportunity to present the project to the Norwegian community!