Case Study
Background
In line with our commitment to fostering two-way engagement, we aimed to create an opportunity for researchers and families to meet in a fun and relaxed environment. We wanted to facilitate conversations, enabling researchers to hear more about the challenges faced by families with rare neurological diseases and receive feedback on the relevance of their research.
FutureNeuro team members who contributed to the Creating Connections event.
Links to Our Research
Our research focuses on the treatment of Dravet Syndrome and rare epilepsies. Ongoing projects include collaborative initiatives with industry partners. The event tied into our Therapeutics theme and contributed to the development of patient registers for rare and genetic forms of epilepsy.
Inputs
A working committee collaborated between Dravet Ireland and our Operations team to plan the event. We secured a Health Research Board events grant (€4,235) and a small industry grant (€3,000). FutureNeuro staff delivered presentations on clinical treatments, sleep, and gene therapy.
Outputs and Outcomes
The event prioritised family accessibility in terms of location, schedule, and content. Invitations were extended to all known Dravet-affected families, resulting in a record attendance of 50 individuals, including children, young adults, parents, and siblings. Researchers delivered lay presentations, engaged in Q&A sessions, and joined families in various activities, including archery and large-floor games.
The event successfully built connections between researchers and families. Feedback highlighted the inclusivity of the event and the desire for more similar gatherings. Dravet Ireland representatives contributed to a funding application addressing sleep disturbances in children with Dravet syndrome, resulting in funding from The Dravet Foundation.
Families have fun and doing activities at the Creating Connections event.
