Dear Friends,

A life-changing, recharging, information-gathering day is quickly approaching. Our 2022 Virtual Day of Dravet workshop is almost here! This year’s one-day workshop takes place on Saturday, September 24, from 12-5 pm ET, followed by caregiver lounges from 6-7 pm ET.

Learn about research and treatment options, connect with other Dravet syndrome families, and be part of DSF’s shared vision for a better outcome for those affected by Dravet syndrome.

We encourage you to check out this online event and get accurate information to help you make confident and appropriate decisions regarding your loved one’s care. Sessions are presented by community experts – including other parents.

There are no registration fees for this year’s event thanks to the generous support of our sponsors.

Learn more and see the full agenda of speakers and sessions here.

Warmly,

Dravet Syndrome Foundation

Now Enrolling for Longboard PACIFIC Study Trials

Longboard Pharmaceuticals, Inc. is testing the investigational drug LP352 for patients with Developmental and Epileptic Encephalopathy (DEE), including Dravet syndrome. LP352 is a serotonin-modulating drug (called a 5-HT2C superagonist).

In this study, researchers want to test the safety of multiple doses of the investigational drug LP352 and find out how it works when given in addition to an antiseizure medication to patients with DEE. The study will assess any adverse events as well as changes in motor seizure frequency.

This trial is now enrolling participants ages 12 to 65 who have been diagnosed with DEE.

Learn more about how to enroll or view our other clinical trials here.

News and Events

• Race for Research - Join DSF’s Race for Research program. Help spread awareness and raise funds to support those affected by Dravet syndrome! Upcoming Race for Research event:

  • Race Away Dravet: Augusta, GA

• Steps Toward a Cure - Steps Toward a Cure is going virtual! If you've been wanting to participate, but have not had an event in your area, now is your chance to get your steps in with us from wherever you are. Join us virtually September 18 - 25, 2022, or see our upcoming in-person events below:

  • Steps Toward a Cure: Desloge Chamber

  • Steps Toward a Cure: Seattle

  • Steps Toward a Cure: Toledo

  • Steps Toward a Cure: Schaumburg

  • Steps Toward a Cure: Atlanta

• DSF Casino Night - Our Casino Night fundraiser includes casino games, dinner, sponsorships, live and silent auctions, and more. It is a great excuse for adults to have a fun night out while supporting a cause they care about! Find an upcoming Casino Night in your area, or we'd love for you to host your own! Upcoming Casino Night event:

  • Double Down for Dravet: Houston

• Dance for Dravet - Dance for Dravet is an annual fundraising event organized by the Brennan and Odlaug families to raise funds for the Dravet Syndrome Foundation. This year's event will take place on October 14, 2022 at Third Degree Glass Factory in St. Louis, Missouri.