Dravet Syndrome Awareness Month celebrates hope of families

Virtual remembrance wall for families to honor loved ones with Dravet

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by Mary Chapman |

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From honoring those lost to Dravet syndrome to sharing facts on social media, supporters are marking Dravet Syndrome Awareness Month, observed each June to call attention to the genetic disorder that affects an estimated one in 20,000 to 40,000 individuals globally.

International Dravet Syndrome Awareness Day is June 23.

Awareness and education are vital to improving the recognition, diagnosis, knowledge, and management of Dravet syndrome, a genetic condition characterized by seizures that last five to 30 minutes or longer, and are hard to control with anti-epileptic treatments.

The campaign seeks to heighten awareness among the general public, as well as lawmakers, industry representatives, public authorities, researchers, and health professionals.

“By raising awareness of Dravet syndrome, our community can increase knowledge in the general public; improve early diagnosis; assure that patient families have the information they need to manage their loved one’s care; and reduce the feelings of isolation faced by patients and their families,” states the Dravet Syndrome Foundation (DSF) on an awareness month webpage.

“Your support and hard work has been instrumental in the progress made for our patient community in the last decade. 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 organization notes.

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This year’s theme: Community. Research. Progress.

The foundation is offering a number of ways to participate in the annual event, this year themed “Community. Research. Progress.” which is also the organization’s new tagline. One highlight is its fourth annual remembrance day, which takes place each year on June 15 to remember and reflect on those who died from Dravet complications. The names of those lost may be submitted to the DSF for inclusion on its virtual remembrance wall. There will be a Facebook Live video tribute at noon EST.

“Bereaved families are invited to share the names of their deceased loved ones who have passed away away as a result of Dravet syndrome, for inclusion on DSF’s Remembrance Wall,” the organization states on the #dravetremembranceday submissions webpage. “This virtual wall provides a place and a way for families, along with our community, to remember and honor their loved ones forever.”

In addition, supporters are encouraged to establish a personal DSF fundraising page or participate in Dye it for Dravet, a returning challenge in which participants dye their hair purple to spread awareness and to raise $30,000 for research into Dravet and related childhood epilepsies.

Those sporting a new hairdo are asked to share a photo on social media using the hashtag #dyeitfordravet. Participants who raise at least $500 will get $50 in “Dravet dollars” for use in the DSF’s online store. Registration is free.

The challenge began in 2021 after Jen, the mother of Cora, a Dravet patient, donated her purple-dyed hair to a pediatric cancer organization to support Epilepsy Awareness Month, which is observed each November.

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Supporters encouraged to spread awareness on social media with #curedravet

Throughout the month, the foundation encourages supporters to follow and share its posts on social media to help raise awareness, using the hashtag #curedravet. Participants may also customize their Facebook profile photo frame, and personalize provided disease facts with a photo of their loved one with Dravet.

There are 30 template designs, with no limit on the number a participant may use. Each shows a Dravet fact such as “Dravet syndrome starts in the first year of life,” “Seizures can strike at any time, without warning,” and “Individuals with Dravet syndrome commonly experience developmental delays.”

On June 22, the Dravet Syndrome Foundation will host its third Wings of Hope butterfly release in Minneapolis at its 2024 Family & Professional Conference, held June 20-22. The butterfly release, which may also be viewed on Facebook Live, “will honor our children, celebrate hope & remember those who have passed,” a webpage states. Through May 24, participants were able to “purchase” a butterfly in honor or in memory of a loved one for $25. The fundraiser, to benefit the DSF, sought to raise $10,000 but ultimately garnered more than $12,200.

For International Dravet Syndrome Awareness Day, the DSF will join advocacy partners globally in raising awareness through a variety of efforts, including sharing Dravet family stories, educating others about the disease, sporting DSF swag to spark conversations, and seeking local government proclamations.