About Jamie Cohen

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So far Jamie Cohen has created 17 blog entries.

Double Down Beantown

By |2019-07-15T16:37:45-05:00July 16th, 2019|Categories: Our Community|

2019 Double Down Beantown – Boston Bets Against Dravet Congratulations and thank you Karina & Daniel Fischer, Lauren & Jon Forker, Stephanie & Josh Goldman, Abby & Micah Hemani, Amy & Lenny Lopez, and Barbara & John Swoyer. These 6 Boston area families joined forces to host an amazing first time gala fundraiser [...]

Fintepla RTF Update

By |2019-07-15T16:38:30-05:00July 16th, 2019|Categories: Research / Treatments|

Zogenix To Resubmit New Drug Application Zogenix, Inc. anticipates that they will be resubmitting their New Drug Application (NDA) to the U.S. Food & Drug Administration (FDA) in the third quarter, 2019 without additional chronic toxicity studies for Fintepla (ZX008, low dose fenfluramine). In April, the FDA issued a Refusal to File (RTF) [...]

Patient Voice Webinar

By |2019-07-16T07:39:58-05:00July 16th, 2019|Categories: DSF Programs|

Patient Voice in the Development of Research Webinar Dravet Syndrome Foundation (DSF) has developed a webinar because there is an increasing recognition of the importance of the involvement of patients in the development of research that will impact their disease state. In 2018, DSF, received a generous grant from the Patient Centered Outcomes [...]

$104M to Gene Therapy

By |2019-07-15T20:31:01-05:00July 16th, 2019|Categories: Research / Treatments|

Encoded Therapeutics Finances $104 Million to Advance Lead Gene Therapy Program Encoded Therapeutics, Inc. announced they will use $104 million in Series C financing to advance its lead gene therapy program in Dravet syndrome and its preclinical pipeline. They also unveiled their precision gene therapy platform. Encoded presented preclinical data on their approach [...]

5K for Dravet: Denver

By |2019-07-15T19:41:08-05:00July 16th, 2019|Categories: Events|

2019 Steps Toward a Cure: Denver, CO Join us for a fun, family-friendly event that includes a professioanl timed 5k run, 1 mile walk and family fun day at 5K for Dravet: Colorado on Sunday, August, 11, 2019 5K for Dravet: Colorado was started in 2013 by the Craner Family in honor of [...]

Researcher Spotlight

By |2019-06-13T16:58:26-05:00June 15th, 2019|Categories: Our Community|

Danielle Andrade, MD, MSc, FRCPC Please welcome our newest Medical Advisory Board (MAB) member, Danielle Andrade, MD. Dr. Andrade has devoted her time and medical expertise to improving the lives of those afflicted with Dravet syndrome and associated epilepsies. As a MAB member, she offers input on clinical trials that impact the Dravet [...]

Caregiver Connect

By |2019-06-13T21:25:33-05:00June 15th, 2019|Categories: DSF Programs|

Caregiver Connect Launch DSF is pleased to announce Caregiver Connect – a new multi-year collaboration between DSF and Greenwich Biosciences for caregivers and families. Caregiver Connect is a unique multi-faceted program with a focus on helping families manage the caregiver burden and stress that accompanies caring for a child with a rare epilepsy [...]


By |2019-06-13T21:22:27-05:00June 15th, 2019|Categories: Research / Treatments|

Stoke BUTTERFLY Study The BUTTERFLY Study, conducted by Stoke Therapeutics, is collecting information about the mental development, behavior, movement, communication skills, seizure frequency, and sleep pattern of young people with Dravet syndrome. The BUTTERFLY Study is an observational study, which means that no investigational medications or other treatments will be provided. Participants will [...]

June is Awareness Month

By |2019-06-18T14:00:51-05:00June 15th, 2019|Categories: Events|

Dravet Awareness Month YOU ASKED AND WE LISTENED! DSF is offering a lot of great opportunities for education, advocacy, and support. We're also expanding our support to the entire community, beyond just our support groups. Every Friday from through June 28, we will feature guest blogs by parents sharing their family’s journey with [...]

Nayzilam Nasal Spray

By |2019-06-13T16:56:59-05:00June 15th, 2019|Categories: Research / Treatments|

FDA approves Nayzilam Nasal Spray The FDA has approved Nayzilam(®)(midazolam) Nasal Spray for the acute treatment of intermittent, stereotypic episodes of frequent seizure activity (i.e. seizure clusters, acute repetitive seizures). The nasal spray is designed as a single-use treatment for patients 12 years and older. It can be carried with a patient and [...]