The CJD Support Network Family Support Meeting took place in Chester this year on 6th and 7th September. On Friday 6th, fifty one of us got together for an informal evening meal – an opportunity for new attendees to meet others personally affected by prion diseases, and for those who have been to the meeting before to see some familiar faces before the main meeting on Saturday 7th. The main meeting included talks from clinicians and scientists, round table discussions and an extra long lunch break to give extra time for connecting with one another.
We would like to say a huge thank you to all who attended and made this a supportive event. Feedback on what people found most beneficial about the day included:
“Having experts answer the multitude of questions I had, I think it’s hard to move forwards when questions keep our minds in the past.”
“Meeting the other families, it helped to talk and not feel so alone with what happened to our dad. Hearing from the experts was also good and I feel I have a better understanding of CJD what happened to my dad.”
Over the coming months, our coordinator Beth and the executive committee will work together to begin planning our Family Support Meeting for 2025, taking on board all of the suggestions received from this year’s attendees in our efforts to make the day as beneficial and supportive as possible for those who attend.
