Dravet Syndrome Foundation leading awareness month efforts
Alongside fundraising, month features remembrance day, international event
June is Dravet Syndrome Awareness Month in the U.S., and the Dravet Syndrome Foundation is spearheading efforts to raise funds and spread the word about this rare type of epilepsy.
“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,” the foundation states on its website.
To help support activism within the community, the foundation has created an advocacy toolkit, with resources including a calendar outlining advocacy steps that can be taken each day of the month, informational graphics that can be shared on social media, and template emails that can be used to send messages to elected officials. Some of these resources are available in Spanish for the first time, as well as in English.
Dye it for Dravet raises funds, encourages supporters to dye hair purple
Dravet syndrome is a type of epilepsy in which seizures begin during the first year of life. The rare genetic condition affects 1 in 20,000 to 40,000 people globally. It is usually caused by mutations in the SCN1A gene.
The theme of this year’s campaign is “Turning Awareness into Action!” Along those lines, the foundation is encouraging the community to get in touch on social media — including tagging the foundation on its various social media platforms and posting with the hashtags #curedravet and #advocatefordravet. The foundation also has created a template that can be used to make a customized profile picture to showcase advocacy efforts.
As in years past, the foundation is running a fundraising operation called Dye it for Dravet, which encourages supporters to dye their hair purple to create Dravet syndrome awareness. Registration for this fundraising effort is free online, and anyone who raises at least $500 will get a $50 credit that can be used at the foundation’s online store. The store sells Dravet-themed swag including clothing, bags, and mugs.
In addition to the monthlong advocacy and fundraising efforts, there are two days of special significance in June. The first is Dravet Remembrance Day, which takes place June 15 and is an opportunity to reflect and remember those who have been lost to Dravet syndrome. Names can be submitted online for the foundation’s virtual remembrance wall. Community members can mark remembrance day on social media with the hashtag #dravetremembranceday.
On June 23, the foundation is joining with other advocacy groups worldwide to recognize International Dravet Syndrome Awareness Day, which also aims to raise awareness about the condition. The community is encouraged to share their stories, contact their elected representatives, and connect on social media with the hashtag #dravetawarenessday.
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