This year, we are encouraging our families and supporters to help us Fight Dravet by participating in a virtual fundraising event through June 30th
You can participate in our Join the Fight Challenge by registering for free at www.fightdravet.org. When you set up your personal campaign page, be sure to tell your story about your loved one with Dravet syndrome. While this is a fundraising challenge, we also want to take advantage of the opportunity to raise awareness and let others know what it is like to live with Dravet syndrome and the many unmet needs of our patient community. Once your page is done, you can share it via email and on all of your social media accounts. Be sure to tag DSF and use the hashtag, #fightdravet.
We have also put together a Dravet Awareness Fact Challenge board. This board lists 12 facts about Dravet syndrome. You can share the challenge board, along with the link to your fundraising page, to educate about the many complexities of living with this disease, and encourage donors to sponsor at one of the accompanying donation amounts. If you get donations for each square – or raise $415 or more – you are eligible to receive a DSF swag bag and t-shirt.
Your participation will help us continue to raise awareness and important funding for research and advocacy programs. Please join DSF and Join the Fight this June! #fightdravet
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.