Decoding Dravet Blog

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)

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

When a family first receives a diagnosis of Dravet syndrome for their child, they may feel overwhelmed and unsure where to begin. Often your first instinct is to turn to the internet for more information. But with a rare disease such as Dravet syndrome, general information you may find can be out of date, based

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

The Seizure Action Plan Coalition is excited to announce our 2021 Back to School initiatives: In 2020, the Seizure Action Plan (SAP) Coalition was formed by the Dravet Syndrome Foundation, the LGS Foundation, and the TSC Alliance to fill an unmet need in the epilepsy community. This collaborative effort is designed to raise awareness of what

Your commitment and engagement as part of the DSF community has been instrumental in the progress that has been made for patients and families living with Dravet syndrome in the last decade. Now more than ever, we need your help! Dravet Syndrome Awareness Month takes place each June in the U.S. This is our annual

This year, we are encouraging our families and supporters to help us Fight Dravet by participating in a virtual fundraising event through June 30th You can participate in our Join the Fight Challenge by registering for free at www.fightdravet.org. When you set up your personal campaign page, be sure to tell your story about your