Veronica Hood

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So far Veronica Hood has created 23 blog entries.

Dravet Syndrome has New Diagnostic Codes

By |2021-03-04T18:20:21-05:00March 5th, 2021|Categories: Decoding Dravet Blog|

New ICD-10 codes are now in effect for Dravet syndrome. Previously, a patient diagnosed with Dravet syndrome would be entered into the medical coding system under a non-specific epilepsy code that did not fully represent the spectrum of medical needs for an individual with Dravet syndrome. The Dravet Syndrome Foundation worked with our Medical Advisory [...]

SUDEP: Education, Research, and Prevention

By |2021-01-29T10:36:44-05:00January 29th, 2021|Categories: Decoding Dravet Blog|

Sudden unexpected death in epilepsy (SUDEP) is a topic that brings up difficult and complex emotions, and, as such, it often goes undiscussed. However, talking about SUDEP can empower families with awareness and preventative strategies, literally helping to save lives. Additionally, increased education surrounding SUDEP lends itself to advocacy efforts to advance research and end [...]

Why be cautious about sharing personal experiences in an active clinical trial?

By |2021-01-22T13:58:13-05:00January 22nd, 2021|Categories: Decoding Dravet Blog|

With so many clinical trials for Dravet syndrome actively enrolling, it is an important time to consider the impacts that talking about experiences in an ongoing trial can have on the outcomes. If you are participating in a clinical trial and observing particularly profound changes following treatment, it can be quite tempting to share that [...]

A Recap of “Curing the Epilepsies 2021”

By |2021-01-08T01:12:00-05:00January 8th, 2021|Categories: Decoding Dravet Blog|

On January 5-7, 2021, the NIH/NINDS (National Institute of Health/ National Institute of Neurological Disorders and Stroke) held the“Curing the Epilepsies 2021: Setting Research Priorities” conference in a virtual format. The goal of the conference was to guide updates to the current Epilepsy Research Benchmarks and Transformative Research Priorities with collaborative feedback from all the [...]

DSF Announces 2020 Grant Recipients

By |2021-02-24T17:20:06-05:00December 4th, 2020|Categories: Decoding Dravet Blog|

The Dravet Syndrome Foundation (DSF) announced the 2020 grant awardees last night at the 11th annual Research Roundtable. DSF is excited to be funding two 2-year research grants and an additional 1-year postdoctoral fellowship. Following this year’s awards, DSF’s total contribution to research projects will be nearly $5 million. The first of the 2-year grants [...]

The impact of COVID-19 in Dravet Syndrome: a UK survey

By |2020-11-10T10:26:47-05:00November 10th, 2020|Categories: DSF Research Review|Tags: , , , |

The COVID-19 pandemic has raised health concerns worldwide, but particularly in communities that may be at higher risk from illness and infection. To understand this better in the Dravet syndrome community, Dravet Syndrome UK (DSUK) performed a survey of families caring for an individual living with Dravet syndrome from June-July 2020 to assess the impacts [...]

Lorcaserin Enters Clinical Trials for Dravet Syndrome

By |2020-10-15T23:42:42-05:00October 16th, 2020|Categories: Decoding Dravet Blog|

Serotonin (5-HT) signaling has been a major focus of drug development targeting seizures in Dravet syndrome (DS) in recent years. For example, the community recently saw the FDA-approval of Fintepla (fenfluramine) as an adjunctive (add-on) therapy for DS. Fenfluramine had been a known anti-epileptic agent since the 1980’s, particularly utilized in Europe, but its marketing [...]

ENVISION: A 2-year observational study of Dravet syndrome

By |2020-09-17T22:26:32-05:00September 18th, 2020|Categories: Decoding Dravet Blog|

The Dravet syndrome community has long been awaiting gene therapy approaches to provide true disease-modifying treatments. We now watch optimistically as new therapies are in final stages of pre-clinical development or are beginning early-phase clinical trials. One of the challenges of these types of gene-based therapies entering human clinical trials is that a placebo-control approach [...]

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