Avatar

About Jamie Cohen

This author has not yet filled in any details.
So far Jamie Cohen has created 37 blog entries.

Will You Dash for Dravet?

By |2019-11-14T09:49:27-05:00November 15th, 2019|Categories: Events|

Dash for Dravet on Turkey Day: Virtual Event Before the feast, get your family and friends together for our 4th Annual Dash for Dravet on Turkey Day! This is a virtual 5K so it can be accomplished anywhere in the United States Run, walk, jog, roll or treadmill at your pace. Burn off calories before [...]

Double Down Philadelphia

By |2019-11-14T08:43:47-05:00November 15th, 2019|Categories: Our Community|

2019 Double Down for Dravet: Philadelphia Thank you Jamie & Jason Cohen, Wendy & Greg Fry, Bethany & Brad Goering, Sarah & Adam Jacobs, Dana & John Keating, Laura Kennedy & Danielle Paffett, Erika & Ryan Rettew, and Alexis & Peter Shapiro. These 8 Philadelphia area families joined forces to host an amazing [...]

Birthday Buddies Club

By |2019-11-14T08:33:33-05:00November 15th, 2019|Categories: DSF Programs|

Birthday Buddies Club Join the DSF Birthday Buddies Club and your child will receive a birthday card and small gift from DSF's mascot, Aurora! Patients of any age may participate, however, at this time, the DSF Birthday Buddies club is only available for Dravet syndrome patients in the United States and the parent [...]

TakeOnEpilepsy.com Relaunch

By |2019-11-14T08:44:29-05:00November 15th, 2019|Categories: Research / Treatments|

TakeOnEpilepsy.com Website Re-Launch Families who take on rare and severe forms of epilepsy deserve more. That’s why we’re excited to let you know Greenwich Biosciences has enhanced its site, TakeOnEpilepsy.com, with more resources and more uplifting stories than ever to serve the needs of our resilient community. A new, easy-to-navigate design makes it [...]

Peer Support Workshop

By |2019-11-14T09:48:25-05:00November 15th, 2019|Categories: Research / Treatments|

Peer Support Best Practices Workshop DSF is excited to partner with The Child Neurology Foundation on their upcoming Peer Support workshop! CNF, along with their co-host, the American Epilepsy Society, is inviting non-profit staff in the child neurology space who are interested in the peer support model. The workshop will be held December [...]

Fintepla NDA Resubmitted

By |2019-10-16T14:43:00-05:00October 16th, 2019|Categories: Research / Treatments|

Zogenix Resubmits New Drug Application Zogenix, Inc. recently announced that it has resubmitted its New Drug Application (NDA) for FINTEPLA® (ZX008, fenfluramine) for the treatment of seizures associated with Dravet syndrome to the U.S. Food and Drug Administration (FDA). The NDA is based on data from two pivotal Phase 3 trials and an [...]

Baxter Women in Business

By |2019-10-16T14:44:09-05:00October 16th, 2019|Categories: Our Community|

Thank You Baxter Women in Business! Baxter Women in Business is a group of women in the Baxter Village area of Fort Mill, SC. Their focus is on supporting their neighborhood by helping fellow women in business and offering their services to Baxter Village and surrounding communities. The Baxter Women in Business hosted [...]

Day of Dravet Registration

By |2019-10-16T14:38:42-05:00October 16th, 2019|Categories: DSF Programs|

2019 Day of Dravet Registration is Open DSF’s Day of Dravet Workshops are a time for patients and their families to come together to learn about research and treatment options, connect with one another, and be a part of a DSF’s shared vision for a better outcome for those affected by Dravet syndrome. [...]

ENDYMION Trial Update

By |2019-10-16T14:42:19-05:00October 16th, 2019|Categories: Research / Treatments|

ENYDMION Trial Reports Positive Initial Data Ovid Therapeutics recently announced positive initial data from the ENDYMION trial, Phase 2 open-label extension study of soticlestat (OV935/TAK935) in patients with rare developmental and epileptic encephalopathies (DEE) such as Dravet syndrome and Lennox-Gastaut syndrome (LGS). Soticlestate is a potent, highly-selective, first-in-class inhibitor of the enzyme cholesterol [...]