Last month, several of our researchers attended the annual Dravet Syndrome Ireland (DSI) symposium, which this year was tailored specifically to parents and caregivers. 

Though Dravet Syndrome is recognised as a rare form of epilepsy, epilepsy is only one aspect of living with this condition. Symptoms can vary greatly from person to person, with seizures typically beginning in the first year of life and evolving over time. 

As DSI’s primary educational event of the year, the Symposium provides an invaluable opportunity to connect and share knowledge. We were thrilled some of our researchers could be part of such a successful and impactful event. 

FutureNeuro PhD Candidate Rafael Cipolat remarked, “Being part of Dravet Syndrome Ireland’s 2024 Symposium was truly enlightening for everyone involved. It’s not just an event; it’s a vital hub where the latest research findings are shared, and where the invaluable exchange of insights and experiences between researchers and parents takes centre stage.” 

Post-Doctoral Fellow Petra Bencurova added, “As a scientist researching Dravet Syndrome, I find the opportunities to connect with affected families profoundly meaningful. Hearing about their hopes and struggles provides a unique perspective on the syndrome, sparking my motivation and enriching my research. Events like these create essential platforms for sharing insights and personal experiences, demonstrating to these families that they are not alone. They also reinforce the presence of a dedicated community of researchers and healthcare professionals working tirelessly to help.”

The Symposium  

Nicole Kehoe, Chairperson of DSI, set the tone with a warm welcome, laying out the day’s agenda, detailing DSI’s mission, discussing future initiatives, and excitingly announcing the launch of the DSI Family Support Grant for members. 

“It’s fantastic to come together as a community. It can be very isolating as a parent of a child with significant additional needs; our family life is so different compared to friends with typically developing children. It’s great to share our experiences and learn from each other.” 

Our clinical researcher, Dr Susan Byrne, kicked off the presentations with a comprehensive overview of Dravet Syndrome, covering its diagnosis and treatment options. Additionally, Susan shed light on the epilepsy registries that FutureNeuro is involved in establishing, underscoring their pivotal role in shaping research and treatment policies. 

Dr Susan Byrne said; “Dravet Syndrome Ireland is a wonderful support for children and their families. The programme was really engaging, covering everything from emerging treatments to educational strategies for schools. Connecting with families associated with the organization was a definite highlight, offering invaluable insights into their priorities and experiences.” 

Next up was Orla O’Connor, a school principal and special education teacher who brought her firsthand experience to the forefront. Orla passionately discussed the critical need for dedicated special education in schools and offered insights into its effective implementation, stressing the importance of tailoring it to meet the unique needs of every child requiring support. 

Our Clinical Researcher, Prof Norman Delanty, wrapped up the morning session with a presentation on upcoming treatments. Norman, a staunch advocate for registries, underscored their pivotal role in advancing treatments for Dravet Syndrome. He delved into the array of medications currently used to treat the condition, emphasising the importance for parents and caregivers to advocate to ensure their children get the best medications possible. 

Gene therapy holds immense promise as a future treatment for Dravet Syndrome. Norman spoke about how it can work, and the ongoing research being done by pharmaceutical companies. 

Prof Norman Delanty remarked; “It was a pleasure to meet and talk with many of the parents involved in Dravet Syndrome Ireland.  It is heartening to see the level of engagement and interest in new treatments for the genetic epilepsies among families.  Critically also, such events remind researchers of why their work is so important.”

Take-homes 

Engaging with others facing similar challenges and having conversations with speakers can be immensely beneficial when navigating life with Dravet Syndrome and its impact. When asked what else parents would like, the resounding answer was for more events like this and opportunities for families to come together. 

A parent who attended the Symposium, commented; “All the speakers were brilliant, very important topics and discussions.” 

A heartfelt thank you to Dravet Syndrome Ireland for organising such a fantastic event, and to all the parents and caregivers who spoke with our FutureNeuro team to help us ensure we continue delivering engaged research for the benefit of the community.