About Jamie Cohen

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So far Jamie Cohen has created 153 blog entries.

Community Spotlight

By |2021-11-15T08:30:09-05:00November 15th, 2021|Categories: Our Community|

Meet The Odlaug, Nusslock and Brennan Families In this Community Spotlight, meet The Odlaug, Nusslock, and Brennan Families and join us in thanking and congratulating them on reaching their fundraising goal of $1 million for DSF! Andrew and Kimberly Odlaug blessed their family in September 2017 with the birth of Anna Grace. Anna [...]

Caregiver Connect

By |2021-11-12T14:25:41-05:00November 15th, 2021|Categories: DSF Programs|

Caregiver Connect In 2019 DSF launced Caregiver Connect – a 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 who has complex [...]

Dash for Dravet: Virtual Event

By |2021-11-10T13:13:36-05:00November 15th, 2021|Categories: Events|

Dash for Dravet:   Virtual Event Thanksgiving Day is just 10 days away! Here is your chance to get your family and friends together for our 5th annual Dash for Dravet on Turkey Day, and help raise funds to further research in Dravet syndrome and support the important programs of DSF! We are [...]

MONARCH Trial Update

By |2021-11-12T09:23:03-05:00November 15th, 2021|Categories: Research / Treatments|

Phase 1/2a MONARCH clinical trial of STK-001 update Stoke Therapeutics released interim safety, pharmacokinetic, and CSF exposure data from their Phase 1/2a MONARCH trial of STK-001 in individuals with Dravet syndrome. • The data in this analysis comes from 21 patients in the Single Ascending Dose arm of the study (SAD: 1 dose [...]

PAME Memory Wall

By |2021-11-12T09:23:23-05:00November 15th, 2021|Categories: Research / Treatments|

Partners Against Mortality in Epilepsy Memory Wall Partners Against Mortality in Epilepsy (PAME) is a collaboration among health care providers, clinical researchers, basic scientists, public health officials, patient advocates, caregivers, bereaved families, and people living with epilepsy. This range of stakeholders come together with a common goal of improving our understanding of and [...]

Researcher Spotlight

By |2021-10-27T08:56:19-05:00October 27th, 2021|Categories: Our Community|

Meet Lori Isom, PhD In this Researcher Spotlight meet DSF's Scientific Advisory Board (SAB) Co-Chair, Lori Isom, PhD. As a SAB member, Lori reviews and approves all research grant applications and meets annually with other interested researchers and scientists to discuss innovative and promising research in the field of Dravet syndrome and associated [...]

Day of Dravet Registration

By |2021-10-26T16:30:59-05:00October 27th, 2021|Categories: DSF Programs|

2021 Day of Dravet Registration is Open Join the DSF Family Network for our 5th annual Day of Dravet workshops this October! 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 [...]

In-Person Events Are Back

By |2021-10-27T08:51:50-05:00October 27th, 2021|Categories: Events|

Steps Toward a Cure: Atlanta After having to make the tough decision to cancel all-in person events last year, we are excited to have finally had our first in-person event since February 22, 2020. On Saturday, October 16,11 Dravet families joined friends and family for Steps Toward A Cure: Atlanta. This 1 mile [...]

Adult Providers Transition Guide

By |2021-10-27T08:53:56-05:00October 27th, 2021|Categories: Research / Treatments|

Dravet Syndrome Transition Guide Transition of care, or the process of moving from pediatric to adult health care providers, is one of the most challenging issues facing adults with Dravet syndrome and their families. DSF worked with our Medical Advisory Board to help address one of the issues that families with Dravet syndrome face [...]

Dash for Dravet: Virtual Event

By |2021-10-26T11:51:57-05:00October 27th, 2021|Categories: Events|

Dash for Dravet:   Virtual Event Here is your chance to get your family and friends together for our 6th annual Dash for Dravet on Turkey Day, and help raise funds to further research in Dravet syndrome and support the important programs of DSF! This virtual 5K can be accomplished anywhere in the [...]

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