Decoding Dravet Blog

There is still time to register for a Day of Dravet workshop!

Our biennial Day of Dravet workshops kick off on September 16th, in Denver, Colorado. Day of Dravet Workshops are a time for patients and their families to come together to learn about research and treatment options, connect with one another, and be a part of a DSF’s shared vision for a better outcome for those affected by Dravet syndrome.

Parents can attend educational and community sessions, and there will be time to connect with other local families. Toys and activities for patients with Dravet syndrome will be available in the meeting room. Breakfast and lunch will be served.

We will once again host our VIP Sib Camp, where siblings have the opportunity to meet and connect with other sibs. Sib camp will include a fun outing at each venue.

Learn about topics you have heard about and get accurate information to help you make confident and appropriate decisions on what will be helpful for your loved one’s care. Sessions are presented by community experts – including other parents. This is a chance for patient families to connect with others in their region and have the rare opportunity for community building and connection.

Thanks to our sponsors, registration is only $25 per Family!

Locations

MOUNTAIN – Saturday, September 16
Children’s Museum of Denver Marisco Campus
Denver, CO

SOUTHEAST – Saturday, September 23
Central Florida Zoo
Sanford, FL

NORTHEAST – Saturday, October 21
Chelsea Piers
Stamford, CT

WEST – Sunday, October 29
Epilepsy Awareness Day at Disneyland
Anaheim, CA

MIDWEST – Saturday, November 4
Newport Aquarium
Newport, KY

Mary Anne Meskis

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.