Free Concert Event – Joey’s Song!

By |2020-08-26T18:00:05-05:00August 28th, 2020|Categories: Decoding Dravet Blog|

DSF is honored to partner with Joey’s Song for this year’s Remote & Uncontrolled virtual concert. Mark your calendars and tune in to our webpage at 7:50pm est on Wednesday, September 16th! Our evening will begin with a welcome from DSF, followed by the live stream of the concert. Tune in for this free event, [...]

Focal epilepsy in SCN1A-mutation carrying patients: is there a role for epilepsy surgery?

By |2020-08-23T23:03:55-05:00August 28th, 2020|Categories: DSF Research Review|Tags: , , , |

In this brief report published in June, Vezyroglou et al detail the results of epilepsy surgery for focal seizures in 8 patients carrying mutations in the SCN1A gene that were predicted to be causal. Three of the 8 patients had a clinical diagnosis of Dravet syndrome. The surgical procedures were successful in reducing or eliminating [...]

Cardiovascular safety of fenfluramine in the treatment of Dravet syndrome: Analysis of an ongoing long-term open-label safety extension study

By |2020-08-24T12:35:41-05:00August 24th, 2020|Categories: DSF Research Review|Tags: , , , |

FINTEPLA (fenfluramine) was recently approved by the FDA for the treatment of seizures in Dravet syndrome. The FDA required Zogenix, Inc to include a black box warning on the label because fenfluramine belongs to a class of drugs that affect a specific serotonin receptor (5-HT2B), and these types of drugs have previously been associated with valvular [...]

Electrophysiological alterations of pyramidal cells and interneurons of the CA1 region of the hippocampus in a novel mouse model of Dravet syndrome

By |2020-08-24T12:16:38-05:00August 24th, 2020|Categories: DSF Research Review|Tags: , , , |

In this paper, Dyment et al detail a new mouse for the study of Dravet syndrome modeled after a patient mutation. This particular mutation (H939R) does not result in the typical haploinsufficiency where Nav1.1 sodium channel levels are reduced, but rather appears to affect the function of one copy of the sodium channel. Consistent with [...]

DSF Strategic Plan 2020 Update

By |2020-08-17T14:29:48-05:00August 21st, 2020|Categories: Decoding Dravet Blog|

Strategic planning for a nonprofit organization such as the Dravet Syndrome Foundation (DSF) is an important investment of time and resources that provides enormous benefits. It brings clarity and agreement on the organization’s mission and allows preparation for the future. When a community is focused on the same outcomes, they become invested in a common [...]

Aberrant regulation of a poison exon caused by a non-coding variant in Scn1a-associated epileptic encephalopathy

By |2020-08-17T11:28:47-05:00August 19th, 2020|Categories: DSF Research Review|Tags: , , , |

In late June 2020, Voskobiynyk et al shared their recent manuscript on bioRxiv (pre-print before peer-review) detailing a novel mouse model of Dravet syndrome that carries the same mutation in a non-coding region as a patient diagnosed with Dravet syndrome. “Non-coding” means that the mutation is not located in an area of the DNA that [...]

Strategic Plan Update

By |2020-08-17T14:49:20-05:00August 18th, 2020|Categories: DSF Programs|

2019-2020 Progress Report In 2018, Dravet Syndrome Foundation (DSF) developed a 5-year strategic plan to articulate the long‐range direction and priorities for our organization. The content for our strategic plan was derived by examining the Dravet syndrome landscape. We listened to a broad range of input from key stakeholders within our community regarding [...]

MONARCH Study Update

By |2020-08-17T14:48:44-05:00August 18th, 2020|Categories: Research / Treatments|

First patient dosed with STK-001 in Part A of Phase 1/2a MONARCH clinical trial Stoke Therapeutics recently began the Monarch clinical trial and just announced that they have successfully administered STK-001 to the first patient in their trial. STK-001 is a novel disease-modifying therapy that utilizes RNA antisense oligonucleotides (ASOs) to restore levels [...]

#MemberMonday Spotlight

By |2020-08-17T14:48:55-05:00August 18th, 2020|Categories: Our Community|

Meet Addyson & Braxtin! This #MemberMonday meet Addyson and her brother, Braxtin.  Addison wrote us this really sweet letter and we just had to share it with our community! Hello, my name is Addyson Gruber and I wanted to share some pretty exciting news with you all at the Dravet Syndrome Foundation. Back [...]

Back to School Discussion

By |2020-08-17T14:49:07-05:00August 18th, 2020|Categories: DSF Programs|

Back to School Anxiety in the Dravet Community Join DSF for a session on Back to School Anxiety in the Dravet Community While the pandemic has had a devastating effect for all students, most special ed students have had a particularly difficult time adapting to distance learning. In response to this, DSF is [...]

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