Caregiver Appreciation Day is observed each year on the 3rd Friday in February. This year, on February 18th, we honor those who give endlessly of their time and energy to help their loved ones live better lives with Dravet syndrome, and we would like to draw attention to all that they do and sacrifice. We […]
Sending Encouragement on Caregiver Appreciation Day Read More »
A seizure is a medical emergency. A Seizure Action Plan (SAP) incorporates tailored guidelines on how to respond during a seizure. It includes patient-specific information that can assure quick and appropriate intervention. The second annual Seizure Action Plan Awareness Week, sponsored by the SAP Coalition, runs from February 14-18, 2022, with the intent to raise awareness
Seizure Action Plan Awareness Week 2022 Read More »
We are excited to announce the return of our in person biennial DSF Family & Professional Conference on June 23-25, 2022 at The Worthington Renaissance in Fort Worth, Texas. Special thanks to Dr. M. Scott Perry and Cook Children’s Medical Center for their collaboration and planning of this meeting. We invite all members of the
2022 DSF Conference Announcement Read More »
We are so proud of our community’s accomplishments in 2021 and we can’t wait to see what we are able to do in 2022. Even while we are facing the omicron variant and an increase in COVID cases at the time of this writing, our team is optimistic and hopeful that better days lie ahead
Three Things for the Dravet Community to Look Forward to in 2022! Read More »
Wanxuan comes from an ordinary family in China and was born in a city near the sea. There are three sisters in the family. She was the youngest, and her second sister was also autistic. We all love the sea. When did Wanxuan’s seizures begin? She had her first attack when she was almost six
The holidays are a time to be grateful. During this special time of year, it is also a time of great hope as we look ahead to 2022. This coming year holds the promise of new opportunities and exciting advances in the field of Dravet syndrome. While we expect there will be challenges, I know
Looking Forward With Gratitude and Hope Read More »
Wenxi Yu, PhD – University of Michigan $50,000 ONE YEAR POSTDOCTORAL FELLOWSHIP Co-funded with JAM for Dravet Mutations in the sodium channel genes SCN1A and SCN8A are a significant cause of Developmental Epileptic Encephalopathies (DEEs), severe seizure disorders. We demonstrated that reduced expression of Scn8a using a specific ASO can prevent the onset of seizures
Optimizing the Regional Administration of SCN8a-targeting RNAi Therapy Read More »
Simona Balestrini, MD, PhD – UCL Queen Square Institute of Neurology Sanjay Sisodiya, PhD, FRCP – UCL Queen Square Institute of Neurology $150,000 TWO YEAR CLINICAL RESEARCH AWARD Dravet syndrome (DS) is caused by a genetic change that leads to severe epilepsy with difficult-to-treat seizures, cognitive impairment, other neurological and physical symptoms, and heightened risk
Liu Lin Thio, MD, PhD – Washington University in St. Louis Joel R. Garbow, PhD – Washington University in St. Louis $150,000 TWO YEAR RESEARCH AWARD Co-funded with JAM for Dravet Children with Dravet syndrome have drug-resistant epilepsy characterized by different seizure types along with developmental regression and intellectual impairment. Dravet syndrome is genetic with
Ketogenic Diet Modulated Brain Energy Metabolism in Dravet Syndrome Read More »
Jacy Wagnon, PhD – The Ohio State University College of Medicine $150,000 TWO YEAR RESEARCH AWARD Many individuals with Dravet syndrome (DS) do not achieve adequate seizure control using available drug treatments. These drugs also do not sufficiently treat other symptoms of DS, including behavioral and cognitive impairments. We analyzed gene expression in a mouse
Targeting Molecular Responses to Seizures in Dravet Syndrome Read More »
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