Stand Up Against Dravet Syndrome

Stand Up Against Dravet Syndrome


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About Stand Up Against Dravet Syndrome

Please join us for an evening of big laughs and fundraising to benefit the Dravet Syndrome Foundation.

Hosted by Jason Goodall, featuring Jay Armstrong & headliner Mark Riccadonna.

The mission of Dravet Syndrome Foundation (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 a rare, catastrophic, lifelong form of epilepsy that begins in the first year of life with frequent and/or prolonged seizures. It affects 1:15,700 individuals, 80% of whom have a mutation in their SCN1A gene [1].

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:
• 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.

By offering research grants for syndrome-specific research with a novel approach, DSF can move researchers and the medical community forward to find better treatments and a cure while assisting afflicted individuals and their families.

Since 2009, DSF has funded 28 research projects, hosted 7 research roundtables, given over $100K in patient assistant grants and contributed $3.3 million to research.