November is National Epilepsy Awareness Month

By |2019-10-19T18:53:47-05:00October 25th, 2019|Categories: Decoding Dravet Blog|

Epilepsy is one of the least understood of all neurological diseases, and yet it is the fourth most common. We know that one in 26 people will be diagnosed with epilepsy and that over 65M people worldwide suffer from epilepsy. One-third of those with epilepsy experience uncontrollable seizures because there is no currently available [...]

SUDEP Action Day is October 23rd!

By |2019-10-14T10:50:29-05:00October 18th, 2019|Categories: Decoding Dravet Blog|

One of the top concerns for caregivers in the Dravet syndrome (DS) patient community is Sudden Unexpected Death in Epilepsy (SUDEP). Of the almost 20% mortality rate within the DS population, roughly half of those deaths are attributed to SUDEP. This is a terrifying statistic and our families live in constant fear for the [...]

Day of Dravet Registration

By |2019-10-16T14:38:42-05:00October 16th, 2019|Categories: DSF Programs|

2019 Day of Dravet Registration is Open DSF’s 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. [...]

Fintepla NDA Resubmitted

By |2019-10-16T14:43:00-05:00October 16th, 2019|Categories: Research / Treatments|

Zogenix Resubmits New Drug Application Zogenix, Inc. recently announced that it has resubmitted its New Drug Application (NDA) for FINTEPLA® (ZX008, fenfluramine) for the treatment of seizures associated with Dravet syndrome to the U.S. Food and Drug Administration (FDA). The NDA is based on data from two pivotal Phase 3 trials and an [...]

ENDYMION Trial Update

By |2019-10-16T14:42:19-05:00October 16th, 2019|Categories: Research / Treatments|

ENYDMION Trial Reports Positive Initial Data Ovid Therapeutics recently announced positive initial data from the ENDYMION trial, Phase 2 open-label extension study of soticlestat (OV935/TAK935) in patients with rare developmental and epileptic encephalopathies (DEE) such as Dravet syndrome and Lennox-Gastaut syndrome (LGS). Soticlestate is a potent, highly-selective, first-in-class inhibitor of the enzyme cholesterol [...]

Baxter Women in Business

By |2019-10-16T14:44:09-05:00October 16th, 2019|Categories: Our Community|

Thank You Baxter Women in Business! Baxter Women in Business is a group of women in the Baxter Village area of Fort Mill, SC. Their focus is on supporting their neighborhood by helping fellow women in business and offering their services to Baxter Village and surrounding communities. The Baxter Women in Business hosted [...]

2019 Dash for Dravet on Turkey Day!

By |2019-10-09T21:01:11-05:00October 11th, 2019|Categories: Decoding Dravet Blog|

Each November, DSF challenges you to Dash for Dravet on Turkey Day! Our annual virtual race takes place the week of Thanksgiving, and can be accomplished from any location you choose. You can walk, jog, or roll on the road, on the treadmill, or at the gym. And anyone can participate - young or [...]

Gait abnormalities in people with Dravet syndrome: A cross-sectional multi-center study

By |2019-10-10T11:53:21-05:00October 10th, 2019|Categories: DSF Research Review|Tags: , , |

In reviews of Dravet syndrome, statements about gait are usually very generalized, along the lines of: " by the age of 13 years, up to 80% of people with Dravet syndrome walk with a crouch gait". However, it would be useful to have a more specific, and detailed, description, which is what the current [...]

Reduced efficacy and risk of seizure aggravation when cannabidiol is used without clobazam

By |2019-10-10T10:10:57-05:00October 10th, 2019|Categories: DSF Research Review|Tags: , , |

Cannabidiol oral solution (Epidiolex) was recently approved in the United States for the treatment of seizures associated with Dravet syndrome. It is typically used as an adjunct with other medication(s). This paper highlights the observation that the effect of cannabidiol is significantly increased when used in conjunction with clobazam (a.k.a. "Onfi"), and it raises [...]