Each December, the American Epilepsy Society (AES) meeting takes place in the U.S. As the largest gathering on epilepsy in the world, the AES Meeting is the event for epilepsy professionals in academia, clinical practice, industry, and advocacy.  

This was my 14th AES meeting, and I have had the unique opportunity to watch momentum building in the field over the years. But this year has been particularly exciting. Here are some highlights that I hope will encourage you, as they have me, about the positive advancements in the field of Dravet syndrome and the good things to come as a result of our community’s efforts:

    • DSF hosted it’s 10th Research Roundtable. The evening included presentations from Professor Helen Cross, Great Ormond Street Hospital; Amy Schneider, MGenCouns, BSc, BA, University of Melbourne; Louis Dang, MD, PhD, University of Michigan; Gemma Carvill, PhD, Northwestern University; and Daniel Mulkey, PhD, University of Connecticut. In addition, it included a highlight of the progress that has been made in the field of Dravet syndrome since the inception of DSF. Attendees also received a commemorative booklet showing all of the projects funded by DSF in the last 10 years.
    • DSF announced our two newest grant awards to Dr. Danielle Andrade of the University of Toronto, and Dr. Jennifer Kearney of Northwestern University. These grant awards bring us to over $4.6M in Dravet-specific research funded by DSF since 2009.
    • The AES meeting featured several sessions on antisense oglionucleotide (ASO) and genetic therapies. There was so much interest from the professionals in attendance that these sessions were filled to full capacity. Dravet syndrome has been front and center in the discussion of these types of therapies, with both Stoke (ASO) and Encoded Therapeutics (AAV) planning clinical trials in the Dravet syndrome population in 2020 and 2021, respectively.
    • DSF once again hosted a booth in the exhibit center to connect with pediatric and adult neurologists. Our staff worked to spread the word about the importance of diagnosis at any age and the urgent needs of our adult population. They also let attendees know about new treatments available to benefit our patient community – Diacomit, Epidiolex, and Nayzilam – as well as treatments that are anticipated to receive FDA approval in 2020, including Fintepla and Valtoco.
    • Poster sessions are prominent at scientific conferences such as AES. To participate, an abstract is submitted for consideration, and if approved, the academic is invited to present their poster, which shares the research methods and outcomes of their study. Danielle Boyce presented her GETS Study poster that characterized the transition experiences and related recommendations of caregivers of teenage and adult patients with genetic epilepsy, which many of our caregivers of adults with Dravet syndrome participated in. In addition, there were well over 100 posters with a direct relation to Dravet syndrome as part of this year’s poster presentations. You can see all of the abstracts from this year’s poster sessions on the AES website by entering Dravet in the search bar.
    • DSF hosted our annual meeting with our Medical Advisory Board and Scientific Advisory Board members to get their feedback and guidance on where to prioritize our future initiatives. This in-person meeting gives us the opportunity to assure we are including the professional voice, along with the patient voice, in setting our goals and objectives as an organization.
    • Invitae announced the expansion of its free genetic epilepsy testing program, Behind the Seizure up to age 8 for patients in the U.S. and Canada. This initiative, sponsored by BioMarin, Stoke, and Xenon, will help to assure that patients are being diagnosed early and really begins to lay the groundwork for personalized medicine.

If you would like to read more about the highlights from AES that impact the Dravet syndrome community and other Developmental Epileptic Encephalopathies, I would suggest this comprehensive overview written by Ana Mingorance, PhD, the Chief Development Officer of the Loulou Foundation and an independent consultant in genetic epilepsy syndromes and orphan drug development. 

In next week’s blog, Nicole Villas will share an overview on what DSF does during the AES meeting to connect with professionals and raise awareness and why this meeting is an important catalyst in the work we do.