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 [...]

Review of: Enhancing glucose metabolism via gluconeogenesis is therapeutic in a zebrafish model of Dravet syndrome

By |2021-03-24T09:16:38-05:00March 24th, 2021|Categories: DSF Research Review|Tags: , , , |

Banerji et al (2021) recently published a manuscript in Brain Communications describing their investigation of metabolic pathways in a zebrafish model of Dravet syndrome. Previous studies had described metabolic deficits in Dravet syndrome generally related to decreased energetic output. The ketogenic diet remains one of the more successful therapies for seizure reduction in Dravet syndrome, [...]

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 ICD-10 Codes

By |2021-03-16T15:28:44-05:00March 17th, 2021|Categories: Research / Treatments|

New ICD-10 Codes for Dravet Syndrome New ICD-10 codes for Dravet syndrome are now available to assure proper medical coding and help improve diagnosis, care, surveillance, research, and access for patients. ICD-10 codes are used by medical providers to track health statistics about disease and to assist in billing. It is important for a [...]

Community Spotlight

By |2021-03-16T15:28:04-05:00March 17th, 2021|Categories: Our Community|

Meet Heather & Luella! In this month’s Community Spotlight meet Heather Johnson and her Dravet Warrior, 11-year-old Luella. Heather and Luella have helped spread awareness and raise funds for DSF over the years in a variety of ways. One of the most notable ways is their annul campaign, a cake 4 a cure. [...]

Virtual Conference

By |2021-03-16T15:28:57-05:00March 17th, 2021|Categories: DSF Programs|

2021 DSF Family & Professional Virtual Conference Research and new treatments continue to move forward in the field of Dravet syndrome. With the postponement of our 2020 event due to the pandemic, we wanted to offer a virtual learning opportunity to bridge the gap until we can meet again in person next year. [...]

New Study for Adults

By |2021-03-16T15:28:24-05:00March 17th, 2021|Categories: Research / Treatments|

New Study Opportunity for Adults with Dravet Syndrome 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 [...]

Will You Give Up Your Cup?

By |2021-03-16T15:29:44-05:00March 16th, 2021|Categories: Events|

Give Up Your Cup Each March, DSF challenges you to Give Up Your Cup. This annual virtual fundraiser asks you to give up your coffee, tea or other “cup” for one day, one week, one month or anything in between, then donate what you would have spent to DSF. You can help to [...]

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 [...]

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