June 23rd is Dravet Syndrome Awareness Day: Spreading Rare Disease Awareness

June 23rd, 2020 will be recognized as Dravet Syndrome Awareness Day, and June is Dravet Syndrome Awareness Month. These events are dedicated to spreading awareness about the disorder among the general public and the medical community, as well as boosting ongoing advocacy and research efforts. The theme of this year’s events is simple: CURE DRAVET! There are a variety of ways that you can get involved in this year’s awareness events.

About Dravet Syndrome

Dravet syndrome is a form of severe epilepsy that usually begins by the sixth month of life. The disease is most characterized by frequent seizures that are sometimes triggered by fever or hot temperatures. In most cases, the syndrome is caused by mutations of the SCN1A gene. Most of the time, these mutations are not heritable and appear spontaneously. The predominant symptom of Dravet syndrome is seizures; varying types of seizures often occur as the disorder progresses, as well as ataxia, developmental delays, behavioral disorders that may resemble autism, and cognitive impairment. Seizures can be potentially lethal. Management strategies for Dravet syndrome may include a ketogenic diet, anticonvulsant medications, cognitive rehabilitation therapy, and cannabidiol. This rare disorder is estimated to appear anywhere from 1 in every 20,000 to 1 in every 40,000 births. To learn more about Dravet syndrome, click here.

While the ongoing COVID-19/coronavirus pandemic is going to curtail the holding of any in-person events for Dravet Syndrome Awareness Day, you can still take part while remaining safe, virus-free, and physically distanced. 

Many of this year’s activities are being organized by the Dravet Syndrome Foundation. The DSF will be sharing posts on social media about the disorder every day in June. Don’t forget to follow them on social media and share the posts to get exposure using the hashtag #CUREDRAVET. You can find their social media handles on this page.

Any purchases of DSF merchandise, such as branded T-shirts, will go towards spreading awareness. If you already have a shirt, take a selfie while wearing it and upload it to social media. Don’t forget to tag the DSF in your post and use the hashtag.

Have you or your family been impacted by this disorder? Don’t be afraid to share on social media or with a local news source. If your child has been impacted, you can also submit a story to be featured on the DSF website. Click here to get started.

Get involved in a virtual fundraiser. You can start your own on Facebook or register for the Party in Your PJs for Dravet virtual event. Get signed up here.


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