Beginning in 2021, each year DSF will recognize June 15th as Dravet Remembrance Day to allow us to remember all of those who we have lost to this disease.
Bereaved families are invited to share the names of their deceased loved ones who have passed away as a result of Dravet syndrome for inclusion on DSF’s Remembrance Wall. This virtual wall provides a place and a way for families, along with our community, to remember and honor their loved ones forever.
Dravet Remembrance Day will be a time for our community to reflect and remember those who we have lost to Dravet syndrome. On June 15 at noon ET, DSF Board Member, Jenny Tischer, will read the names from the Remembrance Wall on Facebook Live. We encourage all of our community to join and share a few minutes of silence to remember those we have lost. After the reading of this year’s names, the wall will be permanently housed on the DSF website.
You can add your loved one to the wall by registering here. Registered families will also receive a mailed card for Remembrance Day. #dravetremembranceday
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.