Decoding Dravet Blog

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

A strategic plan for a nonprofit acts as a blueprint to focus on what direction the organization will move in. It brings together the organization’s mission and strategy to help its constituents better understand what its priorities are and how they will be achieved. It also allows the organization the opportunity to evaluate its progress,

Patients with Dravet syndrome often require a surgery or other invasive procedure at some point in their life. While there are no specific surgical procedures that are specifically required due to the diagnosis of Dravet syndrome, there are some procedures that occur more commonly, including: feeding tube placement (i.e., g-tube, j-tube), VNS (vagus nerve stimulator)