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 ICD-10 Codes

By |2021-03-16T15:28:44-05:00March 17th, 2021|Categories: Research / Treatments|

New ICD-10 Codes for Dravet Syndrome New ICD-10 codes for Dravet syndrome are now available to assure proper medical coding and help improve diagnosis, care, surveillance, research, and access for patients. ICD-10 codes are used by medical providers to track health statistics about disease and to assist in billing. It is important for a [...]

Community Spotlight

By |2021-03-16T15:28:04-05:00March 17th, 2021|Categories: Our Community|

Meet Heather & Luella! In this month’s Community Spotlight meet Heather Johnson and her Dravet Warrior, 11-year-old Luella. Heather and Luella have helped spread awareness and raise funds for DSF over the years in a variety of ways. One of the most notable ways is their annul campaign, a cake 4 a cure. [...]

Virtual Conference

By |2021-03-16T15:28:57-05:00March 17th, 2021|Categories: DSF Programs|

2021 DSF Family & Professional Virtual Conference Research and new treatments continue to move forward in the field of Dravet syndrome. With the postponement of our 2020 event due to the pandemic, we wanted to offer a virtual learning opportunity to bridge the gap until we can meet again in person next year. [...]

New Study for Adults

By |2021-03-16T15:28:24-05:00March 17th, 2021|Categories: Research / Treatments|

New Study Opportunity for Adults with Dravet Syndrome Dr. Danielle Andrade, an adult neurologist who is an expert in Dravet syndrome (DS), is currently conducting a study of adults with DS to improve the understanding of seizures, symptoms, comorbidities, and daily life as patients age. Part of the study is examining patients that visit [...]

Will You Give Up Your Cup?

By |2021-03-16T15:29:44-05:00March 16th, 2021|Categories: Events|

Give Up Your Cup Each March, DSF challenges you to Give Up Your Cup. This annual virtual fundraiser asks you to give up your coffee, tea or other “cup” for one day, one week, one month or anything in between, then donate what you would have spent to DSF. You can help to [...]

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