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, [...]

Join the Fight!

By |2021-04-08T17:26:54-05:00April 9th, 2021|Categories: Decoding Dravet Blog|

Get ready for 2021 Dravet Syndrome Awareness Month this June! We invite you to JOIN THE FIGHT and show your support through our t-shirt fundraiser on Custom Ink, which runs from today through April 30th. Orders are estimated to ship around May 18th to assure you have them in hand for Dravet Awareness Month. Shirts [...]

Guest Blog: Results from DSUK survey on the patient experience with COVID-19 vaccinations provides reassurance

By |2021-04-01T09:11:10-05:00April 2nd, 2021|Categories: Decoding Dravet Blog|

Our caregiver community has been anxious to learn about the experiences of patients with Dravet syndrome who have received the COVID-19 vaccination. Our friends at Dravet Syndrome UK (DSUK) recently surveyed their community to gather information on the patient experience after vaccination. They have been kind enough to share this with us in the [...]

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