What is soticlestat? Soticlestat is an investigational medication that is currently in Phase 3 trials for the treatment of seizures in Dravet syndrome (1). Soticlestat works differently than any other current anti-seizure medications. Soticlestat blocks a molecule called ‘cholesterol 24-hydroxylase’ or ‘CH24H’, an important part of the pathway that processes cholesterol in the brain (2). […]
Phase 3 Trials for Soticlestat Begin Read More »
The last several years have been an exciting time for the development of new options for seizure rescue medications. Some of the biggest advancements have not necessarily been new medications, but new ways to deliver the medications that might enable patients and their families to choose an option that works best for their situation. What
Seizure Rescue Medications: The Options Continue to Expand Read More »
The transition from pediatric to adult health care providers is incredibly challenging for individuals with complex medical needs. DSF strives to promote research and the development of new tools to aid families in navigating the transition process. Just last year, DSF partnered with Dr. Danielle Andrade and the rest of the DSF Medical Advisory Board
ILAE Transition of Care Survey Read More »
Today’s blog post was created in collaboration with Tanya Brown, PhD the Science Director for TESS Research Foundation and was cross-posted to the Science Simplified Blog. Reading a scientific research article can be really daunting. Scientists who have studied a specific topic for many years are more likely to use “jargon” or very specific and
How to Read a Scientific Paper; Part 2: Breaking Down the Information Read More »
Today’s blog post was created in collaboration with Tanya Brown, PhD the Science Director for TESS Research Foundation and was cross-posted to the Science Simplified Blog. Have you ever wondered how to read a scientific paper? Reading a scientific paper, also called a research article, is different from reading a newspaper article. It can be
How to Read a Scientific Paper; Part 1: Anatomy of a Research Article Read More »
The American Epilepsy Society (AES) held its annual meeting on December 3-7, 2021. This was my first time attending the conference in person, as last year the event was only held virtually. I was really impacted by the vast amount of research focused on Dravet syndrome. For a rare disease, it is not mentioned rarely
2021 AES Meeting Recap Read More »
Last night at their annual Research Roundtable Meeting, the Dravet Syndrome Foundation (DSF) announced funding for five new research grants. DSF is pleased to be funding grants that focus on important topics for individuals with Dravet syndrome, including investigation of metabolic dysfunction, exploration of novel therapeutic targets for disease-modifying therapies, and exploration of changes to
DSF Announces Funding for Five New Research Grants Read More »
Transition of care, or the process of moving from pediatric to adult health care providers, is one of the most challenging issues facing adults with Dravet syndrome and their families. Transition of care can be challenging in general when a patient has a complex medical history and requires a large team of health care providers
Dravet Syndrome Transition Guide Read More »
Last week, I had the opportunity to attend the first annual Stem Cell and Gene Therapy for Neurodevelopmental Disorders Conference hosted by the University of California (UC) Davis MIND Institute. The conference brought together many leaders in academic research focused on finding restorative cures for genetic diseases like Dravet syndrome. Although the conference was only
Highlights from the Stem Cell and Gene Therapy for Neurodevelopment Disorders Conference Read More »
Patients with Dravet syndrome often require a surgery or other invasive procedure at some point in their life. While there are no specific surgical procedures that are specifically required due to the diagnosis of Dravet syndrome, there are some procedures that occur more commonly, including: feeding tube placement (i.e., g-tube, j-tube), VNS (vagus nerve stimulator)
Surgery & Procedures in Dravet Syndrome Read More »
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