By |2019-05-13T13:57:38-05:00April 29th, 2019|Categories: Our Community, Uncategorized|

Meet Southeast Parent Ambassador, Shannon Cloud! This #MemberMonday meet Southeast Parent Ambassador: Shannon Cloud! Shannon lives in Smyrna, GA (in the metro Atlanta area) with her husband Blaine and their three children.  Their oldest child, Alaina, was diagnosed with Dravet Syndrome in 2009 at age 4. Shannon is originally from Pickerington, Ohio and graduated [...]

DSF’s Research Grant Awards Program

By |2020-04-06T15:51:29-05:00April 26th, 2019|Categories: Decoding Dravet Blog|

Dr. Jack Parent of the University of Michigan gave DSF invaluable advice and guidance in our early days. He also recognized and applauded our efforts, and his backing and support gave us credibility within the medical and research communities as the organization grew. He helped us identify researchers, create a patient registry, and organize our [...]


By |2021-02-16T10:31:11-05:00April 22nd, 2019|Categories: Our Community, Uncategorized|

Meet Board Secretary, Kate Hintz! This #MemberMonday meet Board Secretary and fellow Dravet mom, Kate Hintz! Kate’s daughter Morgan was diagnosed with Dravet Syndrome at only 6 months old. Although they received an early diagnosis, Morgan was medically fragile for the first 2 years of life; suffering frequent seizures and related medical complications. Her family [...]

DSF Patient Assistance Programs

By |2020-04-06T16:25:50-05:00April 19th, 2019|Categories: Decoding Dravet Blog|

Dravet Syndrome Foundation (DSF) has developed and offers a variety of programs that serve the needs of our patients and professionals. Two of the programs that are particularly valuable to our patient community are our Patient Assistance Grant Program and our Disaster Relief & Recovery Fund. DSF Patient Assistance Grant (PAG) Program As our patient [...]


By |2019-05-13T14:01:50-05:00April 15th, 2019|Categories: Our Community, Uncategorized|

Meet Mountain Region Parent Ambassador - Shawna Davis! This #MemberMonday meet Mountain Region Parent Ambassador Shawna Davis! Shawna was born and raised in Texas and currently resides in the Fort Worth area with her husband, Jeff, and their two daughters, Kendall and Karley. Karley is their youngest and who diagnosed with Dravet syndrome shortly [...]

Stiripentol Access

By |2019-05-15T10:20:51-05:00April 15th, 2019|Categories: Research / Treatments|

Accessing Stiripentol in the US DSF received notice on the process for patients in the US to secure Diacomit (Stiripentol), effective April 29th. Should patients need Diacomit® before April 29, 2019, they should continue with their current method for medication access, otherwise please refer to the following information:  As of April 29, 2019, [...]

Fintepla Receives Refusal to File

By |2021-02-16T10:28:04-05:00April 15th, 2019|Categories: Research / Treatments|

Zogenix Receives Refusal to File The U.S. Food & Drug Administration (FDA) has issued a Refusal to File (RTF) letter to Zogenix, Inc. for the rolling submission of their New Drug Application (NDA) for Fintepla (ZX008, low-dose fenfluramine). The FDA cited two deficiencies and is asking for additional non-clinical animal study data and [...]

Boston Bets

By |2019-05-13T14:01:04-05:00April 15th, 2019|Categories: Events|

2019 Double Down Beantown - Boston Bets Against Dravet Join us for a night of fun & giving at our inaugural Boston event - Double Down Beantown - Boston Bets Against Dravet We are excited to announce our Gala Honoree - Dr. Elizabeth A. Thiele, MD, PHD. Dr. Thiele is a neurologist and [...]

Dravet Dialogues

By |2019-05-13T14:04:48-05:00April 15th, 2019|Categories: DSF Programs|

New Initiative: Dravet Dialogues DSF is excited to launch Dravet Dialogues, a live, interactive, virtual series of support group meetings taking place March-May 2019. These sessions give parents a chance to connect with community experts on a variety of topics while interacting in real-time with fellow parents and caregivers. We hope that through these [...]

Behavior Survey

By |2019-05-13T14:04:04-05:00April 15th, 2019|Categories: Research / Treatments|

Caregiver Survey: Understanding Behavior DSF is proud to partner with the Child Neurology Foundation to conduct a survey to understand caregivers’ experiences managing disruptive or harmful behavior in children with neurologic conditions, such as Dravet syndrome. Results will be shared with health care providers, so they are better able to serve children with [...]

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