Veronica Hood, PhD

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

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)

As the COVID-19 pandemic continues, vaccination has become a major tool in combating the spread and mitigating the symptomatic infections caused by the novel coronavirus. Vaccination can be a topic of particular concern for individuals with Dravet syndrome (DS) and their families given that vaccines are a common seizure trigger in this disorder. Early childhood

DSF has received many questions about epilepsy surgery for patients with Dravet syndrome recently. If this is something you are considering for your child, it is crucial to know your options and to learn more about what we currently know regarding surgery for patients with Dravet syndrome. It is important to remember that every patient’s

While three new medications have come to market for Dravet syndrome in the past several years, only a portion of patients achieve adequate seizure control. Even for those who experience longer periods of seizure-freedom, the other comorbidities of Dravet syndrome greatly impact quality of life for individuals as well as their families. Therapeutically targeting the

Dr. Danielle Andrade, an adult neurologist who is an expert in Dravet syndrome (DS), is currently conducting a study of adults with DS to improve the understanding of seizures, symptoms, comorbidities, and daily life as patients age. Part of the study is examining patients that visit Dr. Andrade’s clinic at the University of Toronto, but

Sudden unexpected death in epilepsy (SUDEP) is a topic that brings up difficult and complex emotions, and, as such, it often goes undiscussed. However, talking about SUDEP can empower families with awareness and preventative strategies, literally helping to save lives. Additionally, increased education surrounding SUDEP lends itself to advocacy efforts to advance research and end

With so many clinical trials for Dravet syndrome actively enrolling, it is an important time to consider the impacts that talking about experiences in an ongoing trial can have on the outcomes. If you are participating in a clinical trial and observing particularly profound changes following treatment, it can be quite tempting to share that