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 [...]

Finding Resilience Through Reframing: Parents’ Perspectives

By |2021-02-09T17:27:37-05:00February 12th, 2021|Categories: Decoding Dravet Blog|

As a Dravet parent or caregiver, have you ever thought about the term “reframing?”  This week’s guest blog post comes from Barbara Swoyer, who 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 reframing [...]

Seizure Action Plan Awareness Week

By |2021-02-01T17:38:33-05:00February 5th, 2021|Categories: Decoding Dravet Blog|

On February 1, 2020, the Seizure Action Plan (SAP) Coalition launched its new website at www.seizureactionplans.org. This new website offers information and resources for for patients, professionals, and advocacy organizations to learn about and spread awareness of: what a Seizure Action Plan (SAP) is the importance of a SAP in the health management of those [...]

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