Being a grandfather of a child with Dravet syndrome
Let everything happen to you Beauty and terror Just keep going No feeling is final -Rainer Rilke How would you feel if your son called you in the middle [...]
SUDEP Action Day is October 23rd
SUDEP Action Day is October 23rd SUDEP ACTION Day is October 23rd! One of the top concerns for caregivers in the Dravet syndrome (DS) patient community is Sudden Unexpected Death in Epilepsy (SUDEP). Of the almost 20% mortality rate within the DS population, roughly half of those deaths are attributed to SUDEP. This [...]
#MemberMonday Spotlight
Meet Noah & The Zack Pack! This #MemberMonday meet Noah and The Zach Pack! Noah's brother, Zack, has Dravet syndrome and requires full care for just about everything. Zach shares, "This has affected my family's life in both small and big ways. Small as in tucking our chairs all the way in when [...]
Dash for Dravet: Virtual Event
Dash for Dravet: Virtual Event Here is your chance to get your family and friends together for our 5th annual Dash for Dravet on Turkey Day, and help raise funds to further research in Dravet syndrome and support the important programs of DSF! This virtual 5K can be accomplished anywhere in the United [...]
Unspoken Symphony
Introducing unspoken symphony A new way to make music inspired by a child living with a rare and severe form of epilepsy We are thrilled to announce our partnership with Greenwich Biosciences to bring you unspoken symphony, an innovation that turns artwork into melodies—and it was all inspired by a child named Riley. Riley [...]
ENVISION Study Enrollment
ENVISION Observational Study The ENVISION Study is an observational study of children aged 6 to 60 months with SCN1A-positive Dravet syndrome. Conducted by Encoded Therapeutics, ENVISION is designed to better understand the seizure, neurodevelopmental, motor and behavioral characteristics of Dravet Syndrome over a period of 2 years using standardized assessments. The ENVISION study [...]
Lorcaserin Enters Clinical Trials for Dravet Syndrome
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 [...]
Dash for Dravet is BACK!
Here is your chance to get your family and friends together for our 5th annual Dash for Dravet on Turkey Day, and help raise funds to further research in Dravet syndrome and support the important programs of DSF! This virtual 5K can be accomplished anywhere in the United States before, on or after Thanksgiving! Run, [...]
Our Mission. Our Community.
If you are reading this blog, you are most likely already familiar with the Dravet Syndrome Foundation (DSF) and some of the work we do. You probably have some connection to our community, perhaps as a parent/caregiver, clinician, researcher, industry partner, or other supporter. But, have you ever read our mission statement? A mission statement [...]