Dravet Syndrome Foundation's
DAY OF DRAVET WORKSHOPS
Dravet Syndrome Foundation’s (DSF) 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. Participants will come away informed, empowered and connected to a supportive community. There will be one workshop held in each of five regions across the U.S.
These annual workshops will empower families to understand, seek out, and put into place medical care and services that will meet the unique and complex care needs of their loved ones. Included in these events are special activities for siblings, as well as an activity room for children with Dravet syndrome that they may attend with a caregiver. Participants will have the unique opportunity to learn from members of DSF’s Medical & Scientific Advisory Boards, as well as local specialists, and have the opportunity to ask questions about the latest treatment options and research. Sessions will include such topics as clinical trials, co-morbidities and treatment, local services, educational needs and quality of life.
DRAVET SYNDROME FOUNDATION’S MISSION:
The mission of DSF is to aggressively raise research funds for Dravet syndrome and related epilepsies; to increase awareness of these catastrophic conditions; and to provide support to affected individuals and families. Dravet syndrome is an intractable epilepsy that begins in infancy for which there is currently no cure. Along with multiple seizures and seizure types, patients must also contend with the many co-morbidities associated with this condition.
DSF provides support, education and advocacy for families and professionals dealing with the complex issues of this condition. DSF also advances research to improve the quality of life for those living with Dravet syndrome. Since its inception in 2009, DSF has awarded over $3.3M in research grants and over $120K in patient assistance grants.
Mary Anne Meskis, Executive Director firstname.lastname@example.org
Dravet Syndrome Foundation
PO Box 3026
Cherry Hill, NJ 08034