Dravet awareness month campaign turns purple actions into progress
Groups in the U.S. and U.K. are launching advocacy and fundraising efforts
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June is Dravet Syndrome Awareness Month, and advocacy groups in the U.S. and U.K. are launching initiatives to raise awareness of Dravet syndrome and raise funds to fuel research and support families affected by this condition.
In the U.S., this month of awareness is being spearheaded by the Dravet Syndrome Foundation. This year, the foundation’s theme is Purple Drives Progress — emphasizing how individual acts of advocacy can build on one another and expand awareness, and referencing purple as the color representing Dravet syndrome awareness.
“When one purple action inspires another, awareness grows. When awareness grows, more families find connection, more people understand Dravet syndrome, and more support becomes possible for research, education, and family programs,” the foundation states on its website.
Purple challenge aims to spark action
The foundation is asking the community to take part in the Purple Drives Progress Challenge. This involves doing one visible action with purple — such as wearing purple clothes, lighting up a home, building, or landmark, or creating art featuring purple — raising $100, and nominating two other people to also participate.
“Together, small actions across our community can create a ripple effect for research, education, family support, and hope,” the foundation said.
To support community members’ advocacy efforts, the foundation has created an advocacy toolkit that includes a 30-day advocacy calendar and a suite of graphics featuring facts about Dravet syndrome. The foundation is also encouraging the community to get involved on social media; it has created a profile picture frame to help raise awareness. Posts can be tagged with hashtags including #curedravet and #advocatefordravet.
The foundation is also marking two key days this month. June 15 is Dravet Remembrance Day, a time to honor those who have been lost to Dravet syndrome. Names can be submitted online for the foundation’s virtual remembrance wall. June 23 is International Dravet Syndrome Awareness Day, and the foundation encourages community members in the U.S. to share their stories and request a proclamation recognizing the day from state or local officials.
U.K. campaign focuses on love and support
In the U.K., Dravet Syndrome UK is also running advocacy initiatives this June. Its chosen theme is “Love Is,” encouraging people living with Dravet syndrome to share what love looks like to them. Dravet Syndrome UK also offers tools such as a profile picture frame to help spread the word on social media.
Earlier this year, Dravet Syndrome UK conducted a survey asking families affected by Dravet syndrome what they would like to see prioritized in research. Based on responses, the advocacy group has highlighted 12 general themes and is now asking community members to rank them via an online portal, with the goal of ensuring that research efforts align with the community’s priorities.
From June 22 to 29, Dravet Syndrome UK is running a Big Give Match-Funding Week, where all donations will be doubled by a matching fund. Money raised through this fundraiser will support Dravet Syndrome UK’s broader work in research, education, and family support, and will help provide seizure monitors for families affected by Dravet in the U.K. The monitors are not routinely covered by the National Health Service.
