Your commitment and engagement as part of the DSF community has been instrumental in the progress that has been made for patients and families living with Dravet syndrome in the last decade. Now more than ever, we need your help!
Dravet Syndrome Awareness Month takes place each June in the U.S. This is our annual opportunity to highlight our unmet needs and to improve the quality of life for the Dravet syndrome patient community. 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. This year’s theme is: Join the Fight! www.dravetawarenessmonth.org
How You Can Join the Fight!
Start a Fundraiser: Join our June FIGHT FOR A CURE fundraiser. Set up a personal fundraiser page for free, and raise $415 or more to get your free swag bag and t-shirt. Funds raised will support our research program which has accelerated our understanding of Dravet syndrome and helped bring new treatments to market. #fightdravet
Dravet Remembrance Day: Our 1st annual Dravet Remembrance Day will take place on June 15th and will be a time for our community to reflect and remember those who we have lost to Dravet syndrome. Submit your loved one’s name here for inclusion on our virtual Remembrance Wall. #dravetremembranceday
International Awareness Day: On June 23rd, we are joining our advocacy partners and families from around the world in raising awareness of Dravet Syndrome Awareness Day. This year’s Dravet Syndrome Awareness Day falls on the day before the start of DSF’s 2021 virtual conference. #dravetawarenessday
Spread the Word: Follow us on all of our social media channels, then be sure to like and share our daily posts to help raise awareness! Make sure to use the hashtag #fightdravet
Facebook Frames: Use our Facebook Frames to help raise awareness of Dravet syndrome and show that you are in the fight! Click here for this year’s designs and links to add a frame to your Facebook profile.
Share your Support: Print off one of our Dravet Awareness Month signs, share a photo of yourself or your family with the sign on social media to show that you are ready to #fightdravet. Be sure to tag DSF!
Mary Anne was a founding member of DSF, stepping off of the Board to take the position of Executive Director in 2012. She is a passionate advocate for the Dravet syndrome community and has served in various capacities for the community prior to the inception of DSF in 2009. In addition, she currently serves on several epilepsy working groups, including the Epilepsy Leadership Council.
She has owned and managed several small businesses in the private sector, spanning over 25 years. This business experience has translated well into her role as Executive Director. She is responsible for the overall organizational management and has continued to expand programming and fund development for DSF.
Mary Anne resides in North Carolina with her husband and her youngest son, Elliot, who has Dravet syndrome. It is her son who drives her to be a catalyst for change within the Dravet syndrome community.