Supporters Set to ‘Join the Fight’ During Awareness Month
Activities ranging from submitting names for a virtual remembrance wall to swapping out Facebook photo frames are on tap for Dravet Awareness Month, set aside each June to call attention to a severe type of epilepsy that affects an estimated 1 in 15,700 individuals in the U.S.
Awareness and education are vital to increasing the recognition, diagnosis, understanding, and management of Dravet syndrome. The theme this year is “Join the Fight!”
“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 a webpage announcing Awareness month.
On June 15, the organization this year is recognizing, and reflecting on, those who have died from Dravet by presenting its first annual Remembrance Day. Bereaved families are asked to submit the name of their deceased loved one for inclusion on the virtual DSF Remembrance Wall.
At noon (EST) on Remembrance Day, Jenny Tischer, DSF board member, will read the names from the Remembrance Wall on Facebook Live. The organization is encouraging the community to join the event and share a few minutes of silence.
“This virtual wall provides a place and a way for families, along with our community, to remember and honor their loved ones forever,” the foundation states.
There’s also a fundraiser called “Fight For a Cure” for supporters to raise money for the organization’s research program. Go here to set up a fundraiser page, on which participants are also asked to tell the story of their loved one with Dravet syndrome. Those who raise at least $415 get a free T-shirt and “swag” bag.
The event includes the DSF “Join the Fight Challenge.” In it, a 12-fact challenge board will be used to raise funds through social media while educating people about the complex disorder. One “fact,” for instance, is that 80% of Dravet patients have a mutation of the SCN1A gene.
Supporters are also asked to use Facebook photo frames and download and share event DSF signs, which should be posted on social media with a photo of themselves or family.
“Your support and hard work has been instrumental in the progress made for our patient community in the last decade,” the foundation added. “Now, more than ever, we need your help.”
The DSF will join Dravet families and advocacy partners around the world to mark International Dravet Syndrome Awareness Day on June 23. The following day, the organization will present its virtual Family & Professional Conference. Live presentations at this event will focus on research and new treatments.