Upcoming EL-PFDD Meeting February 3rd!

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Join the EL-PFDD Meeting

By |2022-01-24T05:15:56-05:00January 17th, 2022|Categories: Research / Treatments|Tags: |

Particpate in the EL-PFDD on Dravet Syndrome Externally-Led Patient Focused Drug Development (EL-PFDD) Meeting on Dravet Syndrome EL-PFDD meetings bring together patients and caregivers, US Food and Drug Administration (FDA) representatives, pharmaceutical companies, and doctors who are experts in the particular disease. DSF will be hosting a virtual EL-PFDD on Dravet syndrome on [...]

2021 Grant Awards

By |2021-12-16T10:59:31-05:00December 16th, 2021|Categories: Research / Treatments|

2021 DSF Grant Awardees DSF is dedicated to funding the highest caliber research on Dravet syndrome and associated epilepsies. Our focus is on research projects that will find new treatments and improve the quality of life for those living with an ion channel epilepsy. We place a high priority on funding research that [...]

AES Meeting Summary

By |2021-12-16T10:26:52-05:00December 16th, 2021|Categories: Research / Treatments|

AES 2021 Meeting Summary On December 3-7th, 2021, the American Epilepsy Society (AES) held its annual conference to bring together clinicians and scientists on the cutting edge of epilepsy research. This year had a multitude of presentations related to Dravet syndrome, making for an exciting few days focused on what we have learned [...]

MONARCH Trial Update

By |2021-11-12T09:23:03-05:00November 15th, 2021|Categories: Research / Treatments|

Phase 1/2a MONARCH clinical trial of STK-001 update Stoke Therapeutics released interim safety, pharmacokinetic, and CSF exposure data from their Phase 1/2a MONARCH trial of STK-001 in individuals with Dravet syndrome. • The data in this analysis comes from 21 patients in the Single Ascending Dose arm of the study (SAD: 1 dose [...]

PAME Memory Wall

By |2021-11-12T09:23:23-05:00November 15th, 2021|Categories: Research / Treatments|

Partners Against Mortality in Epilepsy Memory Wall Partners Against Mortality in Epilepsy (PAME) is a collaboration among health care providers, clinical researchers, basic scientists, public health officials, patient advocates, caregivers, bereaved families, and people living with epilepsy. This range of stakeholders come together with a common goal of improving our understanding of and [...]

Adult Providers Transition Guide

By |2022-01-21T05:17:30-05:00October 27th, 2021|Categories: Research / Treatments|

Dravet Syndrome Transition Guide Transition of care, or the process of moving from pediatric to adult health care providers, is one of the most challenging issues facing adults with Dravet syndrome and their families. DSF worked with our Medical Advisory Board to help address one of the issues that families with Dravet syndrome face [...]

Surgery & Procedures

By |2022-01-21T05:19:36-05:00September 16th, 2021|Categories: Research / Treatments|

Surgery & Procedures in Dravet Syndrome Patients with Dravet syndrome often require a surgery or other invasive procedure at some point in their life. While there are no specific surgical procedures that are specifically required due to the diagnosis of Dravet syndrome, there are some procedures that occur more commonly, including: feeding tube [...]

COVID-19 Vaccine Survey Results

By |2022-01-21T05:06:39-05:00August 16th, 2021|Categories: Research / Treatments|

Dravet Syndrome and COVID-19 Vaccination As the COVID-19 pandemic continues, vaccination has become a major tool in combating the spread and mitigating the symptomatic infections caused by the novel coronavirus. Vaccination can be a topic of particular concern for individuals with Dravet syndrome (DS) and their families given that vaccines are a common [...]

Adult Neurology Training

By |2022-01-21T05:21:19-05:00August 16th, 2021|Categories: Research / Treatments|

Education Participation Survey There is currently suboptimal exposure to Dravet syndrome in adult neurology training. We believe exposure to Dravet syndrome should be optimized in adult neurology residency training since adult providers will be caring for adults with Dravet. In an attempt to address this educational gap, DSF invites you to join an [...]

Call for Research Proposals

By |2022-01-21T06:29:17-05:00June 17th, 2021|Categories: Research / Treatments|

Applications Due September 10, 2021 The 2021 DSF Research Grant Program is open! Our Research Grant Program was established in 2010 to support investigator sponsored research in the field of Dravet syndrome, which historically has been critically underfunded. Our goal is to support and promote innovative approaches in Dravet syndrome research across disciplines [...]

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