Community gearing up for Dravet awareness month in June

Dye your hair and raise funds during the month's activities

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

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June is Dravet Syndrome Awareness Month, and the community is coming together to share stories, build support, and increase knowledge about this rare form of childhood epilepsy.

The Dravet Syndrome Foundation (DSF) is heading up several initiatives over the course of the month, with this year’s theme being “Community. Research. Progress.”

The foundation will be active on social media, and encourages people in the community to share its posts to help spread the word while using the hashtag #curedravet, increasing awareness and knowledge about Dravet in the wider community.

“Now more than ever, we need your help! Please commit to raise public awareness of Dravet syndrome in one or more ways this June,” the foundation stated in the Awareness Month webpage.

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Ways to mark awareness month in June

Efforts will peak June 23, which is International Dravet Syndrome Awareness Day. The foundation encourages everyone in the community to get involved, share their own stories on social media with the #dravetawarenessday hashtag, or host local events.

The DSF also is running a fundraising challenge, called Dye it for Dravet, that encourages participants to dye their hair, beard, or mustache purple as a way to spread awareness. Those with a new hairdo are asked to share a photo using the #dyeitfordravet hashtag.

Registration for the challenge, which has a fundraising goal of $10,000, is free, and donations as part of the challenge are fully tax-deductible.

In addition to hair color, the foundation encourages community members to wear clothing and use other swag to promote awareness — Dravet-focused items from shirts to coffee mugs are available through the foundation’s online store. Individuals who raise more than $500 through the Dye it for Dravet challenge will get a $50 credit towards the DSF store.

Marking its third year of Dravet Remembrance Day on June 15, the foundation will be hosting a video tribute on its Facebook page at noon EST, as a way to reflect and honor the memories of people who have died from Dravet. People can submit information for a loved one to be included in the tribute here.

Dravet syndrome is a rare and severe type of epilepsy characterized by episodes of prolonged seizures that begin in the first year of life. These seizures are usually resistant to standard anti-seizure medications, and their frequent occurrence can lead to physical, cognitive, and behavioral problems.