Upcoming EL-PFDD Meeting February 3rd!


Upcoming EL-PFDD Meeting February 3rd!

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 [...]

Patient Assistance Grants

By |2020-05-09T09:47:06-05:00April 17th, 2020|Categories: DSF Programs|

Patient Assistance Grant Program Open DSF has long recognized the financial burden our families face and has offered our Patient Assistance Grant (PAG) program since we were first founded in 2009. While it cannot fulfill all of the financial needs within our community, we hope that it offers a positive avenue to obtain [...]

Awareness Month T-Shirt Fundraiser

By |2020-05-01T15:05:31-05:00April 17th, 2020|Categories: Events|

Order now for Dravet Awareness Month! We are excited to debut this year's awareness shirts for Dravet Syndrome Awareness Month! Available in 2T-4XL and a variety of styles (Unisex, Youth, Women's, Athletic Men's and Women's, Toddler, and Long Sleeve). Click on this link to see styles and place your order today! Ordering closes [...]

NEW! Virtual Meet-Ups

By |2020-04-17T08:53:01-05:00April 17th, 2020|Categories: DSF Programs|

Virtual Meet-Ups We held our first Virtual Meet-Ups these past 2 weeks. We thank you for your feedback and we heard you LOUD & CLEAR! The community LOVED meeting up face-to-face with one another to chat about what was on our minds, meet new people and even say hello to some of the [...]

Guest Blog: 24 Hours in the COVID-19 Ward with Marie

By |2020-04-08T10:32:34-05:00April 17th, 2020|Categories: Decoding Dravet Blog|

This week’s guest blog post comes from Yssa DeWoody, PhD. Yssa is the Cofounder and Director of Ring14 USA, a non-profit focused on improving the lives of those affected by rare genetic disorders of the 14th chromosome, in particular Ring14 syndrome, through research, advocacy, and community support. She also serves as the President of Ring14 [...]

Remembering Charlotte

By |2020-04-08T16:21:22-05:00April 8th, 2020|Categories: Decoding Dravet Blog|

Our community is mourning the loss of a special little girl, Charlotte Figi, who had Dravet syndrome and became the face of CBD and the cannabis legalization movement. She touched so many lives in her 13 short years, changed so many minds, and empowered her mom, Paige Figi, to move such enormous mountains that it feels like [...]

Fenfluramine acts as a positive modulator of sigma-1 receptors

By |2020-04-07T10:35:31-05:00April 7th, 2020|Categories: DSF Research Review|Tags: , , |

In previous posts we have profiled fenfluramine as a recent promising add-on therapy for Dravet syndrome, which not only reduces seizures but also improves executive functioning (behavior, emotions, and cognition). Fenfluramine's known pharmacological profile is to bind at 5-HT receptors and enhance the release of serotonin. It is thought that this mechanism is probably insufficient [...]

The Glucagon-Like Peptide-1 Analogue Liraglutide Reduces Seizures Susceptibility, Cognition Dysfunction and Neuronal Apoptosis in a Mouse Model of Dravet Syndrome

By |2020-04-07T10:41:40-05:00April 7th, 2020|Categories: DSF Research Review|Tags: , , |

Glucagon-like peptide-1 (GLP-1) is a hormone that is secreted from intestinal cells after food ingestion, stimulates insulin secretion, and helps regulate blood sugar levels. It also binds to receptors in the brain and promotes satiety, thereby reducing food intake. For these reasons, GLP-1 analogs have become popular as second-line drugs to treat type 2 diabetes [...]

DSF Virtual Meet-Ups

By |2020-04-16T16:54:31-05:00April 3rd, 2020|Categories: Decoding Dravet Blog|

Social distancing will mean we will be staying further apart from one another physically in the coming weeks. Our team and community were disappointed by the postponement of our 2020 Conference, as well as our fundraising events through the end of June. As a Dravet parent, I recognize the importance of these DSF events for [...]


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