Special thanks to DSF Board President and Scientific Director, Nicole Villas, for sharing her perspective on the 2019 AES Meeting.

The Dravet Syndrome Foundation´s 5 staff and 6 board members attended the American Epilepsy Society´s (AES) annual meeting in Baltimore, Maryland, from Dec. 5-9, 2019. As you read our newsletter and social media updates, you may wonder what all the fuss is about, and why we choose to host our annual Research Roundtable the evening before AES. What’s the big deal, you may wonder?

AES is the professional society for neurologists and neuroscientists who focus on epilepsy. While the American Academy of Neurology and Child Neurology Society, support neurologists, AES is dedicated strictly to epilepsy and is therefore an ideal community for our experts. Each year more than 5,000 epileptologists, neurologists, nurses, basic scientists, industry leaders, and patient advocates convene for six days of meetings, workshops, presentations, and posters about the latest in epilepsy research and treatment. If you’ve ever had trouble reaching your neurologist during the first weekend in December, it’s because they’re all at AES!

Here’s how it works:

The meeting is held at a large convention center with more than 10 rooms in operation at any given time. In the main ballroom, which holds 3,000+ people, there are hours-long symposia (def: a drinking party or convivial discussion, especially as held in ancient Greece after a banquet. Oops! Not that definition. Let’s try this one: a series of presentations focused on a topic with discussion or questions.) In other rooms there are Investigator Workshops, which highlight exciting developments in epilepsy research and are designed to encourage interactive discussion about challenges and opportunities for future advances; Special Interest Groups, which bring together experts in different interest areas for lively debates, case studies, presentations, and general discussion; Special Lectures, such as the annual Hoyer Lecture that combines the discussion of state-of-the-art in a specific area of epilepsy and the impact it may have on health care delivery (and is the only lecture broadcast publicly); Career Skills and Pathways Panels, which aim to develop specific skills in neurology team members; and Basic Science Skills Workshops, which aim to improve skills in specific laboratory/basic science research.

While meetings are taking place, vendors, industry, patient advocacy groups, and medical centers host tables with information about their organization in the large Exhibit Hall. Attendees gather there for meals, breaks from the presentations, and general networking. Equally important in the Exhibit Hall are the scientific poster presentations. Despite more than 100 traditional presentations throughout the 6 days, there are more than a thousand other topics, studies, experiments, observations, etc. that are important for the epilepsy community to see. People wishing to share their studies are invited to create large posters outlining their objectives, study design, results, and conclusions, similar to the science fair project presentations we remember from school. Posters are accepted based on merit, novelty, and accuracy, and are displayed in the Exhibit Hall in groups of approximately 400-500 per day. These can be a great way for young investigators who aren’t ready to publish their data in a peer-reviewed journal to highlight their work and present it to the community, for late-breaking studies that haven’t gone to print yet, or for industry to present initial data regarding studies that are not yet publicly available. Although the posters are visually appealing with graphs, bullets, and charts, you can search the less-visually-appealing summaries of the posters on the AES website.

Meanwhile, there are hundreds of other private meetings taking place at the hotels around the convention center between researchers, clinicians, industry, patient advocacy groups, and other stakeholders, because most of us want to take advantage of time when everyone is at least in the same 5-block area! When else can you have a quick face to face meeting between people from Italy, Australia, the UK, New York, and San Francisco at little to no extra cost?

So what, exactly does DSF do at AES? First and foremost, we host our annual Research Roundtable the evening before AES officially starts because, again, we take advantage of having most of the key stakeholders in the same city. We explained the Roundtable in this previous blog post.

Second, we attend the educational presentations, participate on panels when invited (Mary Anne participated on two this year), search the posters and ask questions of their authors, and support our Medical and Scientific Advisory Board members who are usually highlighted speakers in several symposia, Investigator Workshops, and Special Interest Groups. It is truly amazing how prominently the Dravet experts are featured throughout the meeting, and a testament to the importance of our community.

Third, we hold an in-person Board and Staff meeting. Since DSF has no office and our staff and board of directors are spread across the country, we use our time to catch each other up on DSF business.

Fourth, we host the Dravet Syndrome Foundation booth in the Exhibit Hall. There, we hand out swag, brochures, flyers, informational booklets, exchange business cards, and otherwise answer questions from the neurology community. It’s here that we engage with the most adult neurologists.

Lastly, we meet with every single stakeholder at AES. This requires a divide-and-conquer approach, with a mixture of staff and board members attending various meetings with biotech and pharmaceutical companies, other rare disease advocacy groups, clinicians from around the world who are active in Dravet syndrome treatment and research, and everything in between. These meetings help us formalize collaboration and bring the patient voice to studies, often acting as the starting point for projects throughout the year.