New Resource for your Child’s Healthcare Team

By |2021-04-14T13:38:09-05:00April 16th, 2021|Categories: Decoding Dravet Blog|

Receiving a diagnosis of Dravet syndrome is devastating. All the dreams and hopes you have for your child and family are suddenly turned upside down, leaving you with uncertainty and fear of the unknown. Once things begin to settle after diagnosis, we frequently hear from parents that they feel that they are often the expert [...]

Join the Fight!

By |2021-04-08T17:26:54-05:00April 9th, 2021|Categories: Decoding Dravet Blog|

Get ready for 2021 Dravet Syndrome Awareness Month this June! We invite you to JOIN THE FIGHT and show your support through our t-shirt fundraiser on Custom Ink, which runs from today through April 30th. Orders are estimated to ship around May 18th to assure you have them in hand for Dravet Awareness Month. Shirts [...]

Guest Blog: Results from DSUK survey on the patient experience with COVID-19 vaccinations provides reassurance

By |2021-04-01T09:11:10-05:00April 2nd, 2021|Categories: Decoding Dravet Blog|

Our caregiver community has been anxious to learn about the experiences of patients with Dravet syndrome who have received the COVID-19 vaccination. Our friends at Dravet Syndrome UK (DSUK) recently surveyed their community to gather information on the patient experience after vaccination. They have been kind enough to share this with us in the [...]

Gene Therapy for Dravet Syndrome

By |2021-03-26T00:49:10-05:00March 26th, 2021|Categories: Decoding Dravet Blog|

While three new medications have come to market for Dravet syndrome in the past several years, only a portion of patients achieve adequate seizure control. Even for those who experience longer periods of seizure-freedom, the other comorbidities of Dravet syndrome greatly impact quality of life for individuals as well as their families. Therapeutically targeting [...]

Natural History Study of Children with Dravet Syndrome Begins

By |2021-03-21T22:40:48-05:00March 19th, 2021|Categories: Decoding Dravet Blog|

The first patient was just enrolled in ENVISION, a natural history study being conducted by Encoded Therapeutics. There are 7 recruiting study sites, including one in Australia, and two additional sites are currently being added. The study does not provide any interventions, but rather is an observational study that follows children with Dravet syndrome [...]

New Study of Dravet Syndrome in Adult Patients

By |2021-03-12T01:20:42-05:00March 12th, 2021|Categories: Decoding Dravet Blog|

Dr. Danielle Andrade, an adult neurologist who is an expert in Dravet syndrome (DS), is currently conducting a study of adults with DS to improve the understanding of seizures, symptoms, comorbidities, and daily life as patients age. Part of the study is examining patients that visit Dr. Andrade’s clinic at the University of Toronto, [...]

Dravet Syndrome has New Diagnostic Codes

By |2021-03-11T15:56:29-05:00March 5th, 2021|Categories: Decoding Dravet Blog|

New ICD-10 codes are now in effect for Dravet syndrome. Previously, a patient diagnosed with Dravet syndrome would be entered into the medical coding system under a non-specific epilepsy code that did not fully represent the spectrum of medical needs for an individual with Dravet syndrome. The Dravet Syndrome Foundation worked with our Medical Advisory [...]

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 [...]

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