Dravet Syndrome Awareness Month is Here … (Online)

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by Mary Chapman |

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Online Day of Dravet

In light of the COVID-19 pandemic, there are several ways to get involved virtually to support Dravet Syndrome Awareness Month, observed each June.

Organized by the Dravet Syndrome Foundation (DSF), the monthlong event is intended to make this severe type of epilepsy — and the needs of those who have it — more widely known. Dravet syndrome affects one in 20,000 to 40,000 individuals worldwide.

Underscoring the need for more research, and the means to fund it, the theme this year is “Cure Dravet!” In addition, International Dravet Syndrome Awareness Day is June 23.

“DSF is made up of a driven and tireless group of families, medical professionals, researchers, and supporters,” the organization states on its website. “It is because of this amazing community that we can continue to support research, raise awareness, and advocate on behalf of the Dravet syndrome community.”

Supporters who own one of the nonprofit organization’s T-shirts or other branded items are asked to take photos of themselves with the merchandise and share them on social media, tagging DSF and adding the hashtag #CUREDRAVET. All month, the foundation will share photos of community members spreading awareness of Dravet.

The organization will share posts about Dravet on its social media channels, and asks that supporters “like” and share them on their own platforms to boost awareness and understanding of the disease. The DSF also asks supporters to follow it on Facebook, Twitter, Instagram, YouTube, and LinkedIn.

Another way to participate this month is by sharing, on social media or with a local media outlet, personal stories about their Dravet experience. Narratives and accompanying photos or videos may be added to the DSF website. They may be submitted here.

“Knowledge is power, and we want more people to know about Dravet syndrome and get involved with our mission and the work we do,” the organization states.

While the pandemic has forced many people indoors to stay safe, needs continue in the Dravet community. To help fulfill them, the DSF is hosting a live hourlong virtual fundraising event called “Party in Your PJs for Dravet” July 25 at 7 p.m. EST.

In addition to honoring members of the DSF’s medical advisory board, the evening of entertainment will feature games, dancing, and cameo appearances by board members. Registration is necessary to receive a “pajama party pack” of items for the event. Participants are encouraged to wear their favorite pajamas for the affair.

Participants also may set up an optional fundraising page to share with friends and family. Those who raise at least $150 may be eligible for a DSF gift including a DSF pop socket, coffee tumbler, T-shirt, or water bottle. So far, nearly $45,000 of a goal of $75,000 has been raised for Dravet research.

Register here for the Zoom videoconferencing event. Registrants will receive an email July 24 with a link for joining the party.