About Jamie Cohen

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So far Jamie Cohen has created 123 blog entries.

Community Spotlight

By |2021-06-17T10:41:39-05:00June 17th, 2021|Categories: Our Community|

Meet Nathan! In this Community Spotlight meet Nathan Blatt. On May 23rd, Nathan competed in the Ironman 70.3 Chattanooga in honor of his sons, Cooper and Colton. After receiving a diagnosis of Dravet syndrome when Cooper was 1 ½ years old, Nathan and his wife, Whitney, were also tested for the genetic mutation. [...]

Educational Webinar Series

By |2021-06-17T11:21:18-05:00June 17th, 2021|Categories: DSF Programs|

Caring for a loved one with Dravet syndrome or another DEE Caring for a Loved One with DEE and Dravet Syndrome: Harnessing the Power of Knowledge to Enhance Diagnosis, Reduce Seizures, and Improve Overall Quality of Life for All Don’t miss, Caring for a Loved One with DEE and Dravet Syndrome: Harnessing the [...]

Call for Research Proposals

By |2021-06-17T11:20:04-05:00June 17th, 2021|Categories: Research / Treatments|

Applications Due September 10, 2021 The 2021 DSF Research Grant Program is open! Our Research Grant Program was established in 2010 to support investigator sponsored research in the field of Dravet syndrome, which historically has been critically underfunded. Our goal is to support and promote innovative approaches in Dravet syndrome research across disciplines [...]

An Update On Our Staff

By |2021-06-17T10:48:30-05:00June 17th, 2021|Categories: Our Community|

Thank You Wendy! Please join us in thanking Wendy Fry for her role as Director of Family and Caregiver Engagement for DSF. Wendy recently made the very difficult decision to step down from her role to focus on her family. Wendy is a former elementary school teacher living just north of Philadelphia, PA [...]

June is Awareness Month

By |2021-06-09T12:40:47-05:00May 17th, 2021|Categories: Events|

#fightdravet June is Dravet Syndrome Awareness month and June 23rd is International Dravet Syndrome Awareness Day. This year, we are recognizing those that we have lost on our first annual Remembrance Day, June 15th. By raising awareness of Dravet syndrome, our community can increase knowledge in the general public; improve early diagnosis; assure [...]

New Board Member

By |2021-05-17T14:52:47-05:00May 17th, 2021|Categories: Our Community|

Welcome Our New Board Member Welcome to Our New Board Member! Please join us in welcoming our newest board member, Ross Nicholas, who officially began his term on April 15, 2021. Ross lives in Atlanta, GA with his wife Polly and their three children Millie, Finn, and Henry – who has Dravet syndrome. [...]

Virtual Conference

By |2021-05-17T18:56:35-05:00May 17th, 2021|Categories: DSF Programs|

2021 DSF Family & Professional Virtual Conference Learn the latest from top experts in Dravet syndrome! Here is your opportunity to hear the latest on new treatments and research in the field of Dravet syndrome on June 24th-26th - in your home and on your schedule. Join us live to participate in Q&A sessions with [...]

Fintepla Global Access

By |2021-05-17T14:53:08-05:00May 17th, 2021|Categories: Research / Treatments|

Global Access Program for FINTEPLA® (Fenfluramine) Oral Solution Zogenix Launches Global Access Program for FINTEPLA® (Fenfluramine) Oral Solution Zogenix is committed to providing access to and supporting the safe and appropriate use of FINTEPLA (fenfluramine) in countries where it is not yet approved. As an important first step, they have started the “Zogenix [...]

Remembrance Day

By |2021-05-17T19:03:55-05:00May 17th, 2021|Categories: Events|

Dravet Remembrance Day Beginning in 2021, each year DSF will recognize June 15th as Dravet Remembrance Day to allow us to remember all of those who we have lost to this disease. Bereaved families are invited to share the names of their deceased loved ones who have passed away as a result of [...]

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