What is the AES meeting, and why is there so much focus on it?

By |2020-03-10T13:25:23-05:00December 27th, 2019|Categories: Decoding Dravet Blog|

Special thanks to DSF Board President and Scientific Director, Nicole Villas, for sharing her perspective on the 2019 AES Meeting. The Dravet Syndrome Foundation´s 5 staff and 6 board members attended the American Epilepsy Society´s (AES) annual meeting in Baltimore, Maryland, from Dec. 5-9, 2019. As you read our newsletter and social media updates, you [...]

2019 American Epilepsy Society Meeting Recap

By |2020-03-10T13:56:26-05:00December 20th, 2019|Categories: Decoding Dravet Blog|

Each December, the American Epilepsy Society (AES) meeting takes place in the U.S. As the largest gathering on epilepsy in the world, the AES Meeting is the event for epilepsy professionals in academia, clinical practice, industry, and advocacy.   This was my 14th AES meeting, and I have had the unique opportunity to watch momentum building [...]

SCN1A variants from bench to bedside – improved clinical prediction from functional characterization

By |2019-12-17T12:46:54-05:00December 17th, 2019|Categories: DSF Research Review|Tags: , , |

Dravet syndrome is caused by mutations in the SCN1A gene, which encodes for the voltage-gated sodium channel Nav1.1 - a protein that participates in conduction of nerve signals. Thousands of different SCN1A mutations have been reported, but only a small number of these have been characterized functionally. This is unfortunate, because some SCN1A mutations [...]

SCN1A variants in vaccine-related febrile seizures: a prospective study

By |2019-12-17T12:41:21-05:00December 17th, 2019|Categories: DSF Research Review|Tags: , , |

Prolonged febrile seizures (that is, seizures triggered by a fever) are a manifestation of Dravet syndrome. Vaccination is a highly effective public health approach that has led to reduced childhood morbidity and mortality from many infectious diseases, and has an excellent safety profile, but in rare cases can be followed by febrile seizures. Given [...]

2019 Annual Campaign

By |2019-12-16T11:40:47-05:00December 17th, 2019|Categories: Events|

2019 Annual Campaign We hope you will join us as a supporter at DSF’s Annual Campaign and help us achieve our fundraising goal of $175,000. There are 2 easy ways you can give today: Online at www.dsfannualcampaign.org By mail, to DSF, PO Box 3026, Cherry Hill, NJ 08034 Please know that our community [...]

NAYZILAM®Nasal Rescue

By |2019-12-16T17:54:08-05:00December 17th, 2019|Categories: Research / Treatments|

NAYZILAM® Nasal Rescue Availaibility UCB recently announced availability of NAYZILAM® (midazolam) Nasal Spray CIV in retail pharmacies. NAYZILAM is the first and only nasal rescue treatment for seizure clusters in the U.S. It is a ready-to-use solution that can be used when and where a seizure cluster occurs and can be administered by [...]

Community Thanks

By |2019-12-17T09:07:38-05:00December 17th, 2019|Categories: Our Community|

A Year of Thanks We have put our heads together to confront the many problems faced by the Dravet syndrome community and together we have done so much. You’ve stood with us along the way. These changes have happened through the unity and support of our community and because of YOU. You Bashed. [...]

2019 Grant Awards

By |2019-12-16T17:00:40-05:00December 17th, 2019|Categories: Research / Treatments|

2019 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 [...]

Research Roundtable

By |2019-12-16T14:52:46-05:00December 17th, 2019|Categories: DSF Programs|

1oth Annual Research Roundtable The Dravet Syndrome Foundation was honored to host our 10th annual Research Roundtable on December 5, 2019 in conjunction with the American Epilepsy Society’s annual meeting in Baltimore, MD.  The Roundtable began in 2010 with 10-15 scientists and parents brainstorming how to move Dravet syndrome research forward. Ten years [...]

DSF Research Roundtable – 10th Anniversary!

By |2020-03-10T14:22:07-05:00December 13th, 2019|Categories: Decoding Dravet Blog|

Special thanks to DSF Board President and Scientific Director, Nicole Villas, for sharing an overview of the 2019 DSF Research Roundtable in this week's blog post. We are excited to be able to share the impact of our community's ongoing support! The Dravet Syndrome Foundation was honored to host our 10th annual Research Roundtable on [...]

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