Upcoming EL-PFDD Meeting February 3rd!
Upcoming EL-PFDD Meeting February 3rd!
The International Classification of Disease (ICD) is a list first introduced in 1948 by the World Health Organization (WHO) and is coordinated by the Centers for Medicare & Medicaid Services (CMS) and the Centers for Disease Control and Prevention (CDC). It is a system used by healthcare providers to classify and code diagnoses, symptoms, and [...]
Nominations are now open for the 2020 Ciara’s Spirit of Hope Award! I hope you will consider nominating an individual whose dedication through their volunteerism to DSF has been outstanding and inspiring to you. From 2010-2015 the Spirit of Hope award was presented to volunteers at DSF’s annual gala, Ciara’s Butterfly Bash, which was named [...]
Registration for the 4th biennial DSF Family & Professional Conference is open! We are excited to be partnering with Cook Children’s Medical Center in Fort Worth, Texas, and Dr. Scott Perry on this educational and inspiring event which will take place from June 18-20, 2020. It is designed to unite all groups committed to improving [...]
VALTOCO® Nasal Rescue Neurelis, Inc., recently announced the U.S. Food and Drug Administration (FDA) has approved VALTOCO® (diazepam nasal spray) as an acute treatment of intermittent stereotypic episodes of frequent seizure activity (i.e., seizure clusters, acute repetitive seizures) that are distinct from a patient's usual seizure pattern in people with epilepsy 6 years [...]
2020 Double Down for Dravet: H-Town Join us for a night of fun & fundraising at Double Down for Dravet: H-Town. Taking place at Armadillo Palace in Houston, the evening includes appetizers, dinner, drinks, casino games, and silent and live auctions. Tickets are now on sale for $100 per person. Purchase your tickets [...]
DSF is Hiring a Research Coordinator We’re Hiring a Research Coordinator! Are you a scientist who absolutely loves the work that Dravet Syndrome Foundation (DSF) does, but is looking for a change from the lab environment? We have just the opportunity for you! We’re looking for a community-oriented scientist to direct DSF’s research efforts. DSF [...]
2019 Facebook Birthday Thanks We set ourselves a sizable goal in 2019 of raising $100K for Facebook Birthdays! Thanks to everyone that used their birthday as a way to spread awareness and raise funds. We not only met our goal, but we have surpassed that goal by over $27K!!! Every gift, no matter [...]
Video Education Session February 13, 2020 Dravet Syndrome Foundation is pleased to announce a new, live video education session! On Thursday, February 13, 2020 at 2pm ET, head to RareDiseaseLive to hear a dialogue between medical specialists and families facing Dravet syndrome. Panelists include: Kelly G. Knupp, MD, MSCS Dagmar Amtmann, PhD Nicole [...]
I have never been someone who makes New Year’s resolutions, but this year I have decided to break that tradition. As a start to this new decade, my resolution is to let go of things that no longer serve me. We all have negative people or situations that hold us back and can turn us [...]
Dravet syndrome is caused by a mutation in the SCN1A gene, which codes for the NaV1.1 sodium channel a subunit. As described in previous summaries, gene therapy is becoming a very promising approach for fixing genetic disorders, with the use of adeno-associated virus ("AAV") as the preferred delivery system - but the coding region of [...]
