About Jamie Cohen

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So far Jamie Cohen has created 78 blog entries.

#MemberMonday Spotlight

By |2020-09-15T10:41:01-05:00September 15th, 2020|Categories: Our Community|

Meet Zachary & Octane Toy Box! This #MemberMonday meet Dravet Superhero Zachary and Octane Toy Box! Octane Toy Box hosted the 4th Annual UTV Social Charity Fundraiser on August 16th, in Arlington, WA. The fundraiser was a huge success. They raised $2,000 for DSF while spreading much needed awareness. From the entire Dravet [...]

Day of Dravet Registration

By |2020-09-15T10:41:22-05:00September 15th, 2020|Categories: DSF Programs|

2020 Day of Dravet Registration is Open Join the DSF Family Network for our 4th Day of Dravet event on Saturday, October 17th. 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 [...]

Disaster Relief Grants

By |2020-09-15T10:48:17-05:00September 15th, 2020|Categories: DSF Programs|

DSF Disaster Relief Fund FAMILIES AFFECTED BY NATURAL DISASTERS DSF has long recognized the financial burden our families face and has offered our Patient Assistance Grant (PAG) program since we were first founded in 2009. In addition to this program, we have also established the DSF Disaster Relief and Recovery Fund for patients with [...]

EPX-100 Phase II Enrollment

By |2020-09-15T10:40:46-05:00September 15th, 2020|Categories: Research / Treatments|

EPX-100 Phase II Clinical Trial Enrollment Epygenix Therapeutics invites children with Dravet syndrome to participate in a Phase II Clinical Trial In a Phase II, multicenter, randomized, double-blind, placebo-controlled study Epygenix will test the investigational drug, EPX-100 (Clemizole Hydrochloride, oral solution), as an adjunctive therapy for children with Dravet syndrome (2-17 years old) [...]

#MemberMonday Spotlight

By |2020-08-17T14:48:55-05:00August 18th, 2020|Categories: Our Community|

Meet Addyson & Braxtin! This #MemberMonday meet Addyson and her brother, Braxtin.  Addison wrote us this really sweet letter and we just had to share it with our community! Hello, my name is Addyson Gruber and I wanted to share some pretty exciting news with you all at the Dravet Syndrome Foundation. Back [...]

Back to School Discussion

By |2020-08-17T14:49:07-05:00August 18th, 2020|Categories: DSF Programs|

Back to School Anxiety in the Dravet Community Join DSF for a session on Back to School Anxiety in the Dravet Community While the pandemic has had a devastating effect for all students, most special ed students have had a particularly difficult time adapting to distance learning. In response to this, DSF is [...]

Strategic Plan Update

By |2020-08-17T14:49:20-05:00August 18th, 2020|Categories: DSF Programs|

2019-2020 Progress Report In 2018, Dravet Syndrome Foundation (DSF) developed a 5-year strategic plan to articulate the long‐range direction and priorities for our organization. The content for our strategic plan was derived by examining the Dravet syndrome landscape. We listened to a broad range of input from key stakeholders within our community regarding [...]

Virtual Steps Toward a Cure

By |2020-09-11T13:46:35-05:00August 18th, 2020|Categories: Events|

Steps Toward a Cure is going virtual! Mark your calendars and join DSF for our virtual Steps Towards a Cure event! Since we are unable to do in-person events at this time, in place of our annual walk and race events we have put together a virtual 1 mile walk, family stroll, or [...]

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