Upcoming EL-PFDD Meeting February 3rd!


About Mary Anne Meskis

Mary Anne was a founding member of DSF, stepping off of the Board to take the position of Executive Director in 2012. She is a passionate advocate for the Dravet syndrome community and has served in various capacities for the community prior to the inception of DSF in 2009. In addition, she currently serves on several epilepsy working groups, including the Epilepsy Leadership Council. She has owned and managed several small businesses in the private sector, spanning over 25 years. This business experience has translated well into her role as Executive Director. She is responsible for the overall organizational management and has continued to expand programming and fund development for DSF. Mary Anne resides in North Carolina with her husband and her youngest son, Elliot, who has Dravet syndrome. It is her son who drives her to be a catalyst for change within the Dravet syndrome community.

2022 DSF Conference Announcement

By |2022-01-27T15:02:19-05:00January 28th, 2022|Categories: Decoding Dravet Blog|

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 [...]

Three Things for the Dravet Community to Look Forward to in 2022!

By |2022-01-06T18:32:01-05:00January 7th, 2022|Categories: Decoding Dravet Blog|

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 [...]

Meet Wanxuan

By |2022-01-06T14:28:02-05:00January 6th, 2022|Categories: Dravet Stories|

About Wanxuan 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 [...]

Optimizing the Regional Administration of SCN8a-targeting RNAi Therapy

By |2021-12-02T15:06:33-05:00December 2nd, 2021|Categories: Uncategorized|

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 [...]

Use of TMS to understand in-vivo the functional pathophysiology of Dravet syndrome and predict treatment response

By |2021-12-02T15:05:01-05:00December 2nd, 2021|Categories: Uncategorized|

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 [...]

Ketogenic Diet Modulated Brain Energy Metabolism in Dravet Syndrome

By |2021-12-02T15:01:15-05:00December 2nd, 2021|Categories: Uncategorized|

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 [...]

Targeting Molecular Responses to Seizures in Dravet Syndrome

By |2021-12-02T14:41:02-05:00December 2nd, 2021|Categories: Uncategorized|

Jacy Wagnon, PhD - Ohio State 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 model of [...]

Lymphoblast cell lines as a model to uncover metabolic defects in Dravet syndrome Copy

By |2021-12-02T14:36:30-05:00December 2nd, 2021|Categories: Uncategorized|

Manisha N. Patel, PhD - University of Colorado Kelly G. Knupp, MD - Children’s Hospital Colorado $150,000 TWO YEAR RESEARCH AWARD Dravet syndrome (DS) is a catastrophic developmental and epileptic encephalopathy characterized by intractable early-life seizures, and debilitating comorbidities such as cognitive deficits, developmental delay, sleep disturbances, progressive movement abnormalities and increased risk of sudden [...]


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