Race for Research

By |2019-08-21T10:55:30-05:00August 23rd, 2019|Categories: Decoding Dravet Blog|

Are you looking for a way that you can turn your love for fitness into a fundraising activity and see the real impact of your actions for DSF? Your next marathon, distance biking, 5K, or other athletic event could be the start of something wonderful. By signing up for DSF’s Race for Research program, [...]

Dravet Birthdays

By |2019-08-20T09:15:34-05:00August 16th, 2019|Categories: Decoding Dravet Blog|

This week’s guest blog post comes from Wendy Fry. She is mom to Penny, 4, who is living with Dravet syndrome. Penny experienced her first seizure at 8 months. After Penny’s diagnosis, Wendy began fundraising and looking for ways she could help Penny and others with Dravet syndrome. Wendy joined #teamDSF in March 2018 [...]

Double Down for Dravet

By |2019-08-12T15:58:37-05:00August 15th, 2019|Categories: Events|

2019 Double Down for Dravet: Frisco, TX Join us for a night of fun & fundraising at the original Double Down for Dravet in Frisco, Texas Taking place at Toyota Stadium, the evening includes appetizers, dinner, drinks, 3 hours of casino games by Aces Wild, and silent and live auctions. Tickets are now [...]

Epygenix IND Approval

By |2019-08-12T10:44:39-05:00August 15th, 2019|Categories: Research / Treatments|

Epygenix Therapeutics Receives IND Approval Epygenix Therapeutics, Inc., a precision medicine-based biopharmaceutical company,  announced that they have received an Investigational New Drug Application (IND) approval from the U.S. Food and Drug Administration (FDA) for the treatment of patients with Dravet syndrome. EXP-100 is a first-generation antihistamine safely used to treat itch in the [...]

Stoke Orphan Drug

By |2019-08-12T15:28:14-05:00August 15th, 2019|Categories: Research / Treatments|

Stoke Granted Orphan Drug Designation Stoke Therapeutics announced that the U.S. Food and Drug Administration (FDA) has granted orphan drug designation to its lead product candidate, STK-001. STK-001 is an investigational new treatment that has the potential to be the first disease-modifying therapy to address the underlying genetic cause of Dravet syndrome. It [...]

Day of Dravet Registration

By |2019-08-12T15:30:20-05:00August 15th, 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. [...]

Marketing Research Study

By |2019-08-12T15:30:57-05:00August 15th, 2019|Categories: Our Community|

FOCUSED Marketing Research Study FOCUSED Marketing Research has a 20-25 minute on-line market research survey this Fall for parents and/or caregivers of patients with Dravet syndrome that pays $100 for your time. If you are interested in this, or future paid and confidential market research studies, you can opt-in to participate by clinking [...]

Donepezil increases resistance to induced seizures in a mouse model of Dravet syndrome

By |2019-08-14T10:34:53-05:00August 14th, 2019|Categories: DSF Research Review|Tags: , , |

As seen in many of these research summaries, models that reliably mimic human Dravet syndrome, such as engineered mice and zebrafish, allow labs to try out various potential drugs in a quick and safe manner. In this study, the researchers used a Dravet mouse model to test the efficacy of donepezil (a.k.a. "Aricept"), an [...]

Zebrafish studies identify serotonin receptors mediating antiepileptic activity in Dravet syndrome

By |2019-08-14T10:51:58-05:00August 14th, 2019|Categories: DSF Research Review|

In 2013, the Baraban Lab published their work on creating and characterizing an scn1lab mutant model of zebrafish that results in many symptoms of the human disease Dravet syndrome. In that initial report, they described how they used the model to screen thousands of compounds for both anti-seizure effects and non-toxicity, identifying several targets for [...]