Decoding Dravet Blog

Our annual Give Up Your Cup virtual fundraiser asks you to give up your coffee, tea or other “cup” for one day, one week, one month or anything in between, then donate what you would have spent to DSF. You can help to raise funds and spread awareness by setting up a personal fundraising page, […]

Caregiver Appreciation Day is observed each year on the 3rd Friday in February. This year, on February 18th, we honor those who give endlessly of their time and energy to help their loved ones live better lives with Dravet syndrome, and we would like to draw attention to all that they do and sacrifice. We

A seizure is a medical emergency. A Seizure Action Plan (SAP) incorporates tailored guidelines on how to respond during a seizure. It includes patient-specific information that can assure quick and appropriate intervention. The second annual Seizure Action Plan Awareness Week, sponsored by the SAP Coalition, runs from February 14-18, 2022, with the intent to raise awareness

The last several years have been an exciting time for the development of new options for seizure rescue medications. Some of the biggest advancements have not necessarily been new medications, but new ways to deliver the medications that might enable patients and their families to choose an option that works best for their situation. What

We are excited to announce the return of our in person biennial DSF Family & Professional Conference on June 23-25, 2022 at The Worthington Renaissance in Fort Worth, Texas. Special thanks to Dr. M. Scott Perry and Cook Children’s Medical Center for their collaboration and planning of this meeting. We invite all members of the

The transition from pediatric to adult health care providers is incredibly challenging for individuals with complex medical needs. DSF strives to promote research and the development of new tools to aid families in navigating the transition process. Just last year, DSF partnered with Dr. Danielle Andrade and the rest of the DSF Medical Advisory Board

We are so proud of our community’s accomplishments in 2021 and we can’t wait to see what we are able to do in 2022. Even while we are facing the omicron variant and an increase in COVID cases at the time of this writing, our team is optimistic and hopeful that better days lie ahead

The holidays are a time to be grateful. During this special time of year, it is also a time of great hope as we look ahead to 2022. This coming year holds the promise of new opportunities and exciting advances in the field of Dravet syndrome. While we expect there will be challenges, I know