Decoding Dravet Blog

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

The American Epilepsy Society (AES) held its annual meeting on December 3-7, 2021. This was my first time attending the conference in person, as last year the event was only held virtually. I was really impacted by the vast amount of research focused on Dravet syndrome. For a rare disease, it is not mentioned rarely

Thanksgiving is the perfect time to reflect on the year and what we are thankful for. While nobody’s life is perfect, those of us in the Dravet syndrome patient community definitely have our fair share of struggles and tough days. Sometimes it can be difficult to focus on the positive and have hope for the

SAVE THE DATE! We are so excited to announce that we are planning our 5th DSF Biennial Conference on June 23-25, 2022, in collaboration with Cook Children’s Medical Center in Fort Worth, Texas. We are looking forward to finally seeing our community back in person! This 3-day event is unique in that it is designed

Transition of care, or the process of moving from pediatric to adult health care providers, is one of the most challenging issues facing adults with Dravet syndrome and their families. Transition of care can be challenging in general when a patient has a complex medical history and requires a large team of health care providers

Last week, I had the opportunity to attend the first annual Stem Cell and Gene Therapy for Neurodevelopmental Disorders Conference hosted by the University of California (UC) Davis MIND Institute. The conference brought together many leaders in academic research focused on finding restorative cures for genetic diseases like Dravet syndrome. Although the conference was only

We are excited to be hosting our first in-person event since the start of the pandemic! The Brennan Family will host their third annual Dance for Dravet, on Friday October 22, at the Third Degree Glass Factory in St Louis, Missouri. The event is held in honor of their 4-year-old family member Anna Odlaug, who