About Jamie Cohen

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So far Jamie Cohen has created 113 blog entries.

Momentum 1 Research Study

By |2021-02-16T09:41:59-05:00February 16th, 2021|Categories: Research / Treatments|

Momentum 1 Phase 3 Clinical Trial New Research Study Offers Anyone Ages Two and Up a Chance to Help Those with Dravet Syndrome If a loved one has Dravet syndrome, you know that it affects the whole family. Dravet syndrome, a lifelong disease marked by prolonged, frequent seizures, requires constant care and can [...]

Patient Assistance Grants

By |2021-02-16T09:41:38-05:00February 16th, 2021|Categories: DSF Programs|

Patient Assistance Grant Program Opens March 1 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. While it cannot fulfill all of the financial needs within our community, we hope that it offers a positive avenue [...]

Grief and Death Webinar

By |2021-02-26T16:33:44-05:00February 16th, 2021|Categories: Research / Treatments|

Free Webinar: PAME - Grief and Death in Epilepsy: Learning From Loss Grief and Death in Epilepsy: Learning From Loss Tuesday, March 2, 2021 at 2 pm Central Time Register Here Mortality in epilepsy is impacted by factors that are not often present in other disease states, including the suddenness of death, and [...]

Parents’ Perspectives

By |2021-02-16T09:41:14-05:00February 16th, 2021|Categories: Our Community|

Finding Resilience Through Reframing: Parents' Perspectives As a Dravet parent or caregiver, have you ever thought about the term “reframing?” Community member Barbara Swoyer recently wrote about the concept of reframing for the latest issue of NIH MedLine Plus magazine.  In this piece, Barbara incorporated the thoughts of others in the Dravet community about what [...]

Silver Lining Challenge

By |2021-01-20T11:48:37-05:00January 20th, 2021|Categories: DSF Programs|

Silver Lining Challenge Being a caregiver for someone with a chronic and severe medical condition like Dravet Syndrome is exhausting, mentally and physically, even under the best of circumstances. Patient families were filled with even more fear and uncertainty than usual in 2020 with the spread of coronavirus (COVID-19) across the globe. Jim [...]

Thank You Dunkin’ Joy!

By |2021-01-20T09:45:43-05:00January 20th, 2021|Categories: Our Community|

Thank You Dunkin' Joy in Childhood Foundation! Dunkin' Enfield franchise owner Jack Cadigan and The Dunkin' Joy in Childhood Foundation presented DSF staff member, Jenny Gallo, with a check for $5,000 in honor of the grand reopening of the Dunkin' Enfield, CT location. Jack nominated DSF for a grant in honor of his [...]

Curing the Epilepsies

By |2021-01-20T09:38:20-05:00January 20th, 2021|Categories: Research / Treatments|

Curing the Epilepsies 2021: Setting Research Priorities On January 5-7, 2021, the NIH/NINDS (National Institute of Health/ National Institute of Neurological Disorders and Stroke) held the “Curing the Epilepsies 2021: Setting Research Priorities” conference in a virtual format. The goal of the conference was to guide updates to the current Epilepsy Research Benchmarks and Transformative [...]

Parent & Sibling Resource Kits

By |2021-03-15T14:25:22-05:00January 20th, 2021|Categories: DSF Programs|

Sibling & Parent Resources Many members of our community including parents and siblings (ages 9 and up) participated in a research study called the Sibling Voices Survey. Findings from the study were presented at the 2018 DSF Conference in Aurora, CO. An infographic of the findings can be found here. Thanks to continued collaboration with [...]

Birthday Fundraisers

By |2021-01-20T09:38:50-05:00January 20th, 2021|Categories: Our Community|

2020 Facebook Birthday Thanks We set ourselves a sizable goal in 2020 of raising $100K for Facebook Birthdays! Thanks to everyone that used their birthday as a way to spread awareness and raise funds. We not only met our goal, but we have surpassed that goal by over $9K!!! Every gift, no matter [...]

#MemberMonday Spotlight

By |2021-01-20T09:39:15-05:00January 20th, 2021|Categories: Our Community|

Meet David and Natasha! This #MemberMonday meet David and Natasha! David Fischer is a 16-year-old high school student who lives in Newtown, Massachusetts with his parents and 3 siblings. His favorite subject in school is math, and he is a competitive swimmer and Rubik’s cuber as well as an avid chess player. He [...]

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