2021 DSF Family & Professional Conference


Our 2022 Conference will take place June 23-25 in collaboration with
Cook Children’s Medical Center
Fort Worth, Texas

Watch for more details and registration information in January 2022.

Our 2021 Conference has wrapped up!

Thank you to everyone who joined us. If you registered for the event, you will have access to recorded sessions on-demand through September 30, 2021

Event highlights included:

  • A special 90 minute session for parents on sibling impact, followed by a Q&A with a panel of adult sibs who will share their stories and experiences
  • Sessions focused on clinical care
  • Sessions focused on the latest in research
  • Q&A sessions with industry partners to learn about new products and upcoming trials
  • A virtual totebag, with important resources and information important to the Dravet syndrome community

Session Synopses

Friday- Clinical Session Part #1 (11:45am-2:00pm ET)

These talks will provide an overview of the diagnosis and clinical presentation of Dravet syndrome. Talks will cover the initial diagnosis, presentations of symptoms and special considerations for care across the lifetime, and navigation of the difficult transition period from pediatric to adult care.

Friday- Clinical Session Part #2 (2:15pm-5:00pm ET)

This part of the clinical session will include a heavy emphasis on the treatment of Dravet syndrome. Leading clinicians in the field will discuss newly approved treatments for seizures, treatment approaches and seizure action plans for seizure emergencies, as well as gene-based therapies in development or entering clinical trials. There will also be a talk focused on SUDEP (sudden unexpected death in epilepsy) from a clinical perspective. The session will end with a special session sponsored by Zogenix focused on fenfluramine (Fintepla) and quality of life.

Saturday- Science Session Part #1 (11:45am-2:30pm ET)

The talks in this session will begin with some of the basic foundations of research, including what is currently understood about the genetics that contribute to Dravet syndrome and how SCN1A mutations affect the way the brain communicates during development. There will also be talks exemplifying the different model systems that scientists are using to understand and find treatments for Dravet syndrome.

Saturday- Science Session Part #2 (2:45-5:00pm ET)

A major focus of this part of the science session will be focused on the approaches to identifying specific treatment targets for Dravet syndrome from metabolism, to upregulating the SCN1A gene, and targeting other complimentary gene pathways. The session will end on a talk that overviews the basic concepts surrounding clinical trials.

On-Demand Talks

With the 2021 conference going virtual, our sessions have been streamlined. To supplement the more limited “live” content, we have developed several pre-recorded sessions available to watch on-demand. These will include a “primer” on the basics of genes and molecular biology that could be a helpful watch before the live talks, particularly the science-focused sessions. There will be some sessions that focus on SUDEP, including risk factors, prevention, ongoing research, and information about how families continue to contribute to this important work. Some additional talks will supplement the live clinical sessions by providing updates on the study of comorbidities including sleep, cognition, behavior, and gait issues. There will also be some focus on issues specific to caregivers that aren’t covered in the other sessions.