Helping you to learn about the past, present, and future of Dravet syndrome and the Dravet Syndrome Foundation. The Decoding Dravet Blog will keep you up to date on current research, treatment options, advocacy efforts, community activities, and other topics that are important to the Dravet syndrome community.
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 But with a rare disease such as Dravet syndrome, general information you may find can be out of date, based …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 …
Is epilepsy surgery for seizure control an option for individuals with Dravet syndrome? Read More »
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 …
We are excited to announce a new multi-year fundraising and awareness event – Miles for McCall! Dan Hartley is a 49-year-old, US Navy Veteran and business owner, who is a former semi-professional ultra-runner who has competed in numerous ultramarathons and 100-mile races. Having converted to competitive ultra-cycling in 2020, Dan has a full schedule of …
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 …
Beginning in 2021, each year DSF will recognize June 15th as Dravet Remembrance Day to allow us to remember all of those who we have lost to this disease. Bereaved families are invited to share the names of their deceased loved ones who have passed away as a result of Dravet syndrome for inclusion on …
Receiving a diagnosis of Dravet syndrome is devastating. All the dreams and hopes you have for your child and family are suddenly turned upside down, leaving you with uncertainty and fear of the unknown. Once things begin to settle after diagnosis, we frequently hear from parents that they feel that they are often the expert …
Our caregiver community has been anxious to learn about the experiences of patients with Dravet syndrome who have received the COVID-19 vaccination. Our friends at Dravet Syndrome UK (DSUK) recently surveyed their community to gather information on the patient experience after vaccination. They have been kind enough to share this with us in the guest …
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