Please join us in welcoming our two newest board members, Ashley Kerns and Dr. Joseph Sullivan, who will officially begin their terms on April 1, 2020. Ashley resides in Westlake, Louisiana with her three children, Michael, age 9, and Samuel, age 6, and Katie, age 1. Katie was diagnosed with Dravet syndrome at six months [...]
This was a difficult blog post for me to sit down and write because my heart has been so heavy for our Dravet community and the world at large. We are essentially at war, against an invisible enemy. The situation is unprecedented in our lifetime and there is so much uncertainty and fear. But, what [...]
VALTOCO® Nasal Rescue Commercially Available Neurelis, Inc., recently announced the commercial availability of VALTOCO® (diazepam nasal spray) for the 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 adult and pediatric patients 6 years of age [...]
Belviq Recall The pharmaceutical company, Eisai, recently withdrew Belviq (lorcaserin) from the market at the request of federal regulators. Some members of our patient community began taking Belviq off-label, after reports that it potentially helped with seizure control, even though it received FDA approval as a weight-loss drug. The abrupt withdrawal of Belviq [...]
COVID-19 & DSF Conference Update Our team at DSF understands that this is a frightening and uncertain time for our patient families with the spread of coronavirus (COVID-19) in the U.S. We are continuing to monitor COVID-19 via the Centers for Disease Control and Prevention (CDC) and the World Health Organization (WHO). At [...]
In Person Events Postponed ALL IN-PERSON EVENTS THROUGH JUNE POSTPONED It is with great disappointment that we are announcing the postponement of all in person fundraising events through June 30, 2020. With the dramatic escalation of the spread of COVID-19 in the last few weeks, we believe the only responsible choice is to [...]
Free Webinar: Coronavirus (COVID-19) Resources for DEE Families DEE-P Connections is hosting a special webinar, Protecting Medically Complex and/or Immune-Suppressed Children with Epilepsy from COVID-19 on March 19 from 8-9pm ET. This webinar will be moderated by Heidi Grabenstatter, PhD - Science Director of the International Foundation for CDKL5 Research, and will feature three [...]
It is with great disappointment that we are announcing the postponement of the 2020 DSF Family & Professional Conference, in collaboration with Cook Children's Medical Center, that was originally scheduled for June 16-18, 2020. With the dramatic escalation of the spread of COVID-19 in the last few weeks, we believe the only responsible choice at this time [...]
Original Post: March 13, 2020 Updated: April 9, 2020 Dravet Syndrome Foundation (DSF) has updated these FAQs from our good friends and collaborators at the Tuberous Sclerosis Alliance to address concerns from the Dravet) community and healthcare professionals regarding the COVID-19 outbreak. For more comprehensive and up-to-date information refer to the Centers for Disease Control and Prevention (CDC) website. SYMPTOMS [...]
Our team at DSF understands that this is a frightening and uncertain time for our patient families with the spread of coronavirus (COVID-19) in the U.S. We are continuing to monitor COVID-19 via the Centers for Disease Control and Prevention (CDC) and the World Health Organization (WHO). With our biennial conference scheduled for June, we [...]
