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Educational Webinar Series

By |2020-09-11T00:03:45-05:00April 17th, 2020|Categories: DSF News & Notes|

Join us and our VIP expert guests starting May 7th DSF is hosting an educational webinar series weekly beginning May 7th. Register to join any of our sessions live or check back on this page for the recorded version of each session. The series features some of the sessions from our 2020 conference agenda. It also [...]

Lemonade for Logan

By |2016-11-16T15:49:51-05:00September 16th, 2016|Categories: Making a Difference|

Great friends of Logan's family, the Seabolt's hosted a lemonade stand called "Lemonade for Logan". In just a few hours of hard work selling cookies and lemonade, these 4 amazing kids raised $630 for the Dravet Syndrome Foundation to help find a cure for Logan and other kids battling Dravet syndrome and Epilepsy. A big thank you to [...]

Temperature effects on the sodium ion channel

By |2016-11-03T15:08:04-05:00September 1st, 2016|Categories: DSF Research Review|

Peters, C. et al. Temperature-dependent changes in neuronal dynamics in a patient with an SCN1A mutation and hyperthermia induced seizures. It is well documented that cells with SCN1A mutations exhibit abnormal electrical activity when subjected to increased temperature. This activity can sometimes be described as loss of function, and sometimes it can be described as gain of function. This study [...]

Stiripentol in a French Cohort

By |2016-11-03T15:09:12-05:00September 1st, 2016|Categories: DSF Research Review|

De Liso, P., et. al. (Sept 2016). Patients with Dravet syndrome in the era of stiripentol: A French cohort cross-sectional study. Because stiripentol is approved for use in Europe, it is has been prescribed more regularly there than in the US (particularly in France) since the 1990s. Looking at the medical records of 54 patients [...]

In Honor of Trey – Frankfort, IL

By |2016-11-16T14:54:56-05:00August 19th, 2016|Categories: Making a Difference|

Suttondale Subdivision in Frankfort, IL organized the Annual Subdivision Charity Softball Challenge. Trey Gryga is an 11 year old boy who lives in the Suttondale Subdivision and unfortunately was diagnosed with Dravet when he was 3 months old. We decided to make the Dravet Syndrome Foundation the beneficiary for our charity event. With lots of [...]

In Honor of Khloe – Purchase, NY

By |2016-11-16T14:55:09-05:00August 10th, 2016|Categories: Making a Difference|

Khloe was diagnosed with complex partial seizure disorder when she was 16 months old. Although her doctors believe she had seizures as early as six months, given her EEGs. A year ago her diagnosis changed when her Neurology team found a rare genetic mutation that linked her seizures to Dravet syndrome. Dravet syndrome is a rare [...]

Clinical Treatment

By |2016-11-03T15:05:33-05:00July 3rd, 2016|Categories: DSF Research Review|

The role of VNS and surgery in Dravet syndrome is debatable, and neurologists have little data on effectiveness. One very small study reviewed the success rate of these surgeries at a particular institution (Dlouhy, et. al. 2016). Eight surgeries performed on seven patients with Dravet syndrome (one child had both a VNS implanted and, subsequently, a [...]

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