Dear Friends,

June is an extra special month for our community. Dravet Syndrome Awareness Month takes place each June in the U.S., and International Dravet Syndrome Awareness Day is on June 23. This year, we have a packed schedule planned to help celebrate our community and raise public awareness. Keep an eye out for these events next month:

• June 1: Dravet Awareness Month begins
• June 1: DSF debuts its new logo
• June 13: Tune in for the debut of The Balancing Act Presents Behind the Mystery of Dravet Syndrome on Lifetime TV.
• June 15: 2nd annual Dravet Remembrance Day
• June 21: Tune in for the rebroadcast of The Balancing Act Presents Behind the Mystery of Dravet Syndrome on Lifetime TV.
• June 23: International Dravet Syndrome Awareness Day
• June 23: DSF debuts its new website
• June 23 - 25: DSF Biennial Conference in collaboration with Cook Children’s Medical Center

Your support and hard work have been instrumental in the progress made for our patient community. Now, more than ever, we need your help! Whether you share your Dravet story on social media with the hashtag #curedravet, set up a personal fundraiser page, or anything in between, we hope you’ll join us in raising public awareness of Dravet syndrome this June. 

Together, we can shine a brighter light on the experiences and needs of our community. 

Warmly,

Dravet Syndrome Foundation

Participate in Vital Research

Research is our best hope for advancing treatments and eventually finding a cure for Dravet syndrome — and the researchers need your help. For adults ages 18 - 65 with developmental and epileptic encephalopathy (DEE), including Dravet syndrome, Longboard Pharmaceuticals, Inc is seeking participants in their PACIFIC Study for an investigational drug treatment. For Dravet patients ages 12 years and older, The UCB STARS Study is testing an inhaler to see its effectiveness for people experiencing prolonged epileptic seizures. To uncover more ways you can help advance the treatment of Dravet syndrome, learn more here.

News and Events

• Free Storytelling Webinars - Words have power and stories can change lives. Learn how to share your story through our free storytelling webinars and help us raise awareness for Dravet syndrome this June. 

• Birthday Buddies - Register your loved one with Dravet syndrome and they'll receive a birthday card and a small gift from DSF’s mascot, Aurora, the week of their birthday! At this time, Birthday Buddies is available to Dravet syndrome patients in the US.

• Wings of Hope - For just $25 you can sponsor a butterfly in honor or in memory of a loved one during our second Wings of Hope Butterfly Release. Wings of Hope will take place on June 25 in Fort Worth, TX at our 2022 Conference to celebrate hope and remember those who have passed. You do not need to be present to participate in our butterfly release. The last day to purchase butterflies is May 29.