Dravet Awareness 2019

DSF is running a new awareness campaign with our "Not Just a Month" shirts aimed at bringing awareness this rare and incurable condition and paying tribute to our strong and resilient warriors. Thank you to volunteer Jessica Harrison for creating this year's design!

Since its inception in 2009, DSF has given over $4.1 million in research grants and awarded over $150k in Patient Assistance Grants.

Dravet syndrome is a rare, catastrophic, lifelong form of epilepsy that begins in the first year of life with frequent and/or prolonged seizures. Previously known as Severe Myoclonic Epilepsy of Infancy (SMEI), it affects 1:15,700 individuals, over 80% of whom have a mutation in their SCN1A gene. While seizures persist, other comorbidities such as developmental delay and abnormal EEGs are often not evident until the second or third year of life. Common issues associated with Dravet syndrome include but are not limited to:
- prolonged seizures
- frequent seizures
- behavioral and developmental delays
- movement and balance issues
- orthopedic conditions
- delayed language and speech issues
- growth and nutrition issues
- sleeping difficulties
- chronic infections
- sensory integration disorders
- disruptions of the autonomic nervous system (which regulates things such as body temperature and sweating)

Current treatment options are limited, and the constant care required for someone suffering from Dravet syndrome can severely impact the patient’s and the family’s quality of life. Patients with Dravet syndrome face a 15-20% mortality rate due to SUDEP (Sudden Unexpected Death in Epilepsy), prolonged seizures, seizure-related accidents such as drowning, and infections. Research for a cure offers patients and families hope for a better quality of life for their loved ones.

Learn more at www.dravetfoundation.org