What Happens with Medical Care when Children with Dravet Become Adults?

By |2020-04-06T15:12:09-05:00March 29th, 2019|Categories: Decoding Dravet Blog|

A story I often tell is of an encounter I had with a neurologist at a professional meeting several years ago. After introducing himself, he asked what organization I was with. When I told him I was with the Dravet Syndrome Foundation (DSF), he responded, “Oh, I’m adult neurologist. I don’t see patients with Dravet [...]

The Importance of Fundraising for Research

By |2020-04-06T15:09:44-05:00March 22nd, 2019|Categories: Decoding Dravet Blog|

Dravet Syndrome Foundation (DSF) offers programs that bring great value to the Dravet community through three primary pillars - Research; Professional Education; and Caregiver & Patient Support. Our community has done many important things that have helped to move the field forward. DSF's grant program has awarded over $4.1M through 43 research projects. Thanks to [...]

City Bash

By |2019-05-13T14:09:59-05:00March 15th, 2019|Categories: Events|

2019 City Bash Join us for a night of food, fun & fundraising at this unique and intimate venue in NYC - make sure to get your tickets before we sell out! Kate Hintz and Curtis Jones are this year's gala hosts. Their daughter, Morgan, was diagnosed with Dravet syndrome in 2011. Since then, [...]

Fintepla NDA

By |2019-05-13T14:10:44-05:00March 15th, 2019|Categories: Research / Treatments|

Zogenix Submits New Drug Applications Zogenix, Inc. announced it has completed its rolling submission of a New Drug Application (NDA) to the U.S. Food & Drug Administration (FDA) and submitted a Marketing Authorization Application (MMA) to the European Medicines Agency (EMA) for FINTEPLA (ZX008, low-dose fenfluramine). Both applications are based on data from [...]

Family Support

By |2019-05-13T14:09:39-05:00March 15th, 2019|Categories: DSF Programs|

New Support Group: Caregivers of Adults (17+) DSF is excited to launch a support group specifically for the caregivers of adults (17+) with Dravet syndrome. We understand that the needs of this community are unique and we hope this space will provide a safe-haven for parents and caregivers to connect, share stories, and [...]

Dravet Blog

By |2019-05-13T14:08:45-05:00March 15th, 2019|Categories: Our Community|

Decoding Dravet Decoding Dravet is DSF's new blog to help you to learn about the past, present, and future of Dravet syndrome and the Dravet Syndrome Foundation. Written by Executive Director, Mary Anne Meskis, it will also feature guest bloggers later this year. Decoding Dravet will keep you up to date on current [...]

Why You Should Be Wary of Online Health Information

By |2019-05-13T14:10:24-05:00March 15th, 2019|Categories: Decoding Dravet Blog|

Beware of false knowledge; it is more dangerous than ignorance. -George Bernard Shaw The advent of the internet has been of considerable benefit to rare disease patient communities, including the Dravet syndrome (DS) community. It has given patient families the opportunity to easily connect; to find out about the latest in research, treatments, [...]

#MemberMonday

By |2019-05-13T14:11:08-05:00March 15th, 2019|Categories: Our Community|

DSF Board Member Ted Odlaug with granddaughter Anna. Ted Odlaug This #MemberMonday meet our newest Board Member, Ted Odlaug! "I first learned of the Dravet Syndrome Foundation (DSF) soon after my granddaughter Anna, was diagnosed in May 2018. She was just over 7 months old at that time.  None of us knew anything [...]

What Families Affected by Dravet Wished that Everyone Knew

By |2020-04-06T15:20:53-05:00March 8th, 2019|Categories: Decoding Dravet Blog|

Dravet syndrome (DS) is a diagnosis that nobody wants to receive for their child. This is a difficult journey for any family and literally turns life as you knew it upside down. As a parent, you are struggling to learn about this rare condition that your child is never going to outgrow and which impacts [...]

The Power of a Connected Community & Industry Partnerships

By |2020-04-06T15:38:12-05:00March 1st, 2019|Categories: Decoding Dravet Blog|

Early in the development of DSF we could see that community connections, strategic alliances, and partnerships would be critical. As Paul Ryan said, Every successful individual knows that his or her achievement depends on a community of persons working together. By partnering up, we were able to not only produce meaning and value, but we [...]