Upcoming EL-PFDD Meeting February 3rd!


Upcoming EL-PFDD Meeting February 3rd!

2021 DSF Patient Assistance Grant Program

By |2021-04-27T15:47:56-05:00April 30th, 2021|Categories: Decoding Dravet Blog|

DSF has long recognized there is a significant financial burden, direct and indirect, for caring for a child or adult with Dravet syndrome. A 2018 publication found that the average total annual financial burden for a family with a child with Dravet syndrome was $106,378. These costs included direct costs, such as hospitalizations and in-home [...]

New Clinical Study

By |2021-04-16T08:08:53-05:00April 19th, 2021|Categories: Research / Treatments|

Momentum 1 Phase 3 Clinical Trial New Clinical Study Offers Change to Further Research in Dravet Syndrome If your child or a loved one has Dravet syndrome, you know that it affects the whole family. Dravet syndrome, a lifelong disease marked by prolonged, frequent seizures, requires constant care and can significantly impact quality [...]

Thank You Dr. Ian Miller

By |2021-04-19T11:41:36-05:00April 19th, 2021|Categories: Our Community|

Thank You Dr. Ian Miller Please join us in thanking Dr. Ian Miller for serving on DSF's Medical Advisory Board. Dr. Miller accepted a position as Vice-President of Clinical Development with Marinus Pharmaceuticals on March 1st after taking a leave of absence from Nicklaus Children's Hospital due to the health of a loved [...]

Board Member Thanks

By |2021-04-16T08:06:50-05:00April 19th, 2021|Categories: Our Community|

Incoming and Outgoing Board Presidents, Kate Hintz & Nicole Villas Please join us in thanking Nicole Villas for volunteering on DSF’s Board of Directors for the last 6 years. Nicole joined the board in April 2015, serving as president since 2016. In addition to leading the board, Nicole also served as Scientific Director. [...]

Volunteer Hours Available

By |2021-04-19T10:38:23-05:00April 19th, 2021|Categories: DSF Programs|

Order now for Dravet Awareness Month! Is your Super Siblings looking for volunteer hours for school? Is your Super Sibling interested in getting involved with DSF, but not sure where to start? We have the perfect opportunity for him or her. Choose from dozens of projects or suggest your own. Bake Sale Garage [...]

New Resource for your Child’s Healthcare Team

By |2021-04-14T13:38:09-05:00April 16th, 2021|Categories: Decoding Dravet Blog|

Receiving a diagnosis of Dravet syndrome is devastating. All the dreams and hopes you have for your child and family are suddenly turned upside down, leaving you with uncertainty and fear of the unknown. Once things begin to settle after diagnosis, we frequently hear from parents that they feel that they are often the expert [...]

Social Media Signs – #fightdravet

By |2021-04-15T18:45:27-05:00April 15th, 2021|Categories: Uncategorized|

SOCIAL MEDIA SIGNS FOR DRAVET AWARENESS MONTH Show your support this June by clicking on a sign below to download and print your sign. Then be sure to share your photo holding the sign on social media so that we know who you are fighting for. Be sure to tag DSF and use the hashtag, [...]


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