Avatar

About Jamie Cohen

This author has not yet filled in any details.
So far Jamie Cohen has created 27 blog entries.

Double Down Philadelphia

By |2019-09-13T11:31:38-05:00September 15th, 2019|Categories: Events|

2019 Double Down for Dravet: Philadelphia Join us for a night of fun & fundraising at Double Down for Dravet: Philadelphia Taking place at Mitten Hall at Temple University, the evening includes appetizers, dinner, drinks, 3 hours of casino games, silent and live auctions. Tickets are now on sale for $100 per person. [...]

Breastfeeding Research Survey

By |2019-09-13T11:45:31-05:00September 15th, 2019|Categories: Research / Treatments|

Breastfeeding Research Survey Dr. Douglas Nordli and colleagues at The University of Chicago are conducting a study on Breastfeeding and its impact in Dravet syndrome. This research project aims to find the association between breastfeeding practices and age of onset, severity, morbidity and mortality in patients with Dravet syndrome. This non-interventional, anonymous study [...]

Thank You Aaron Family!

By |2019-09-13T11:54:07-05:00September 15th, 2019|Categories: Our Community|

Aaron Family Raises Over $16,000 Jeff Aaron and his wife, Karina (a Sergeant and a Detective for the Chicago Police Department) are one tough team. They have stepped up to the plate to raise funds and awareness for the Dravet Syndrome Foundation in honor of their son, Jackson, who is now 5 years [...]

Caregiver Connect Grants

By |2019-09-13T11:43:32-05:00September 15th, 2019|Categories: DSF Programs|

Mid-Atlantic Meet & Greet Dravet families in Virginia met for a meet and greet on August 3 to connect and share their stories and experiences. It reaffirmed that they are not alone, and that the Dravet Syndrome Foundation (DSF) was a valuable resource in supporting families and patients. Interested in setting up a [...]

Strategic Plan Update

By |2019-09-13T11:32:14-05:00September 15th, 2019|Categories: DSF Programs|

2018-2019 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 [...]

Double Down for Dravet

By |2019-08-12T15:58:37-05:00August 15th, 2019|Categories: Events|

2019 Double Down for Dravet: Frisco, TX Join us for a night of fun & fundraising at the original Double Down for Dravet in Frisco, Texas Taking place at Toyota Stadium, the evening includes appetizers, dinner, drinks, 3 hours of casino games by Aces Wild, and silent and live auctions. Tickets are now [...]

Epygenix IND Approval

By |2019-08-12T10:44:39-05:00August 15th, 2019|Categories: Research / Treatments|

Epygenix Therapeutics Receives IND Approval Epygenix Therapeutics, Inc., a precision medicine-based biopharmaceutical company,  announced that they have received an Investigational New Drug Application (IND) approval from the U.S. Food and Drug Administration (FDA) for the treatment of patients with Dravet syndrome. EXP-100 is a first-generation antihistamine safely used to treat itch in the [...]

Stoke Orphan Drug

By |2019-08-12T15:28:14-05:00August 15th, 2019|Categories: Research / Treatments|

Stoke Granted Orphan Drug Designation Stoke Therapeutics announced that the U.S. Food and Drug Administration (FDA) has granted orphan drug designation to its lead product candidate, STK-001. STK-001 is an investigational new treatment that has the potential to be the first disease-modifying therapy to address the underlying genetic cause of Dravet syndrome. It [...]

Day of Dravet Registration

By |2019-08-12T15:30:20-05:00August 15th, 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. [...]

Marketing Research Study

By |2019-08-12T15:30:57-05:00August 15th, 2019|Categories: Our Community|

FOCUSED Marketing Research Study FOCUSED Marketing Research has a 20-25 minute on-line market research survey this Fall for parents and/or caregivers of patients with Dravet syndrome that pays $100 for your time. If you are interested in this, or future paid and confidential market research studies, you can opt-in to participate by clinking [...]