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1 month ago | 
dravetsyndromenews.com | Meagan Earley |Mary Chapman |Lindsey Shapiro
Within days of my daughter Austen’s accident last summer, I began to think I’d never be able to live in our old house again. A week or so after she died, I went back, just to make sure. Even though I felt at peace on the property, my feelings were confirmed. It wasn’t that I didn’t have happy memories there; they were all around me.
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1 month ago | 
dravetsyndromenews.com | Marisa Wexler |Meagan Earley
Stoke Therapeutics and Biogen are teaming up for the further development and potential commercialization of zorevunersen, an experimental treatment for Dravet syndrome that’s moving into late-stage clinical testing.
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Jan 7, 2025 | 
dravetsyndromenews.com | Marisa Wexler |Meagan Earley |Margarida Maia |Lindsey Shapiro
The U.S. Food and Drug Administration (FDA) has granted rare pediatric disease designation to relutrigine, a treatment candidate for Dravet syndrome that’s being developed by Praxis Precision Medicines. The therapy aims to reduce seizures in children with epileptic disorders such as Dravet. “We are thrilled to have been granted rare pediatric disease designation for relutrigine in Dravet syndrome,” Marcio Souza, president and CEO of Praxis, said in a company press release.
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Nov 5, 2024 | 
dravetsyndromenews.com | Margarida Maia |Meagan Earley |Marta C. Figueiredo |Ana Pena |Ana Peña
In a mouse model study of Dravet syndrome, males were seen to be more vulnerable to abnormal heartbeats and heart deficits in energy-producing mitochondria than female mice. These findings suggest that male Dravet patients may be particularly vulnerable to sudden unexpected death in epilepsy (SUDEP), a fatal seizure complication that is thought to be associated with several factors, including abnormal heartbeats, or arrhythmias.
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Oct 29, 2024 | 
dravetsyndromenews.com | Steve Bryson |Andrea Lobo |Meagan Earley |Marisa Wexler
Children with genetic causes of epilepsy, including Dravet syndrome, were more than five times more likely to have fewer seizures after following a ketogenic diet, known as keto, for one year, according to a new study. Across all types of hard-to-treat epilepsy, nearly three-quarters of patients responded to the low-carbohydrate and high-fat diet. Responders were generally younger than nonresponders, but were older at the time of seizure onset. They also had less frequent seizures before the diet.
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Oct 22, 2024 | 
dravetsyndromenews.com | Andrea Lobo |Meagan Earley |Marisa Wexler |Patricia Inacio
Lundbeck agreed to acquire the company developing bexicaserin, an investigational treatment for seizures associated with Dravet syndrome and other developmental and epileptic encephalopathies (DEEs). Lundbeck will buy Longboard Pharmaceuticals for $60 a share in cash, or a total of about $2.6 billion, the companies announced.
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Oct 15, 2024 | 
dravetsyndromenews.com | Lindsey Shapiro |Meagan Earley |Andrea Lobo |Margarida Maia
Add-on treatment with Diacomit (stiripentol) was associated with reductions in the number of episodes of status epilepticus (SE), periods of prolonged seizure activity, in people with Dravet syndrome and other types of epilepsy, a review study found. Evidence also suggested that Diacomit may be able to stop ongoing SE episodes that aren’t responding to standard treatments, although more research is needed to establish its use for that purpose, the researchers said.
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Sep 24, 2024 | 
dravetsyndromenews.com | Margarida Maia |Meagan Earley |Marisa Wexler |Lindsey Shapiro
Stoke Therapeutics’ zorevunersen, a treatment that addresses the genetic cause of Dravet syndrome, continues to reduce the frequency of seizures in children and adolescents who are taking part in Phase 1/2 clinical studies in the U.S. and the U.K., while also leading to improvements in cognition and behavior.
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Sep 10, 2024 | 
dravetsyndromenews.com | Andrea Lobo |Marisa Wexler |Mary Chapman |Meagan Earley
The Dravet Syndrome Foundation (DSF) is partnering with the Mason’s Movement Foundation to provide bereavement support to families who have lost someone to Dravet syndrome. The partnership connects bereaved families to a Mason’s Movement initiative called the Good Mourning Project, which provides resources, support, and remembrance items to parents and siblings. The goal is to ensure grieving Dravet families in the U.S. have access to resources that may help them through a difficult time.
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Aug 20, 2024 | 
dravetsyndromenews.com | Marisa Wexler |Meagan Earley |Patricia Inacio |Mary Chapman
Targeting a heart protein called NaV1.6 may help prevent sudden death in adults with Dravet syndrome, a study in mice suggests. The study, “Cardiac-Specific Deletion of Scn8a Mitigates Dravet Syndrome-Associated Sudden Death in Adults,” was published in JACC: Clinical Electrophysiology.
