By |2019-05-17T13:52:55-05:00June 10th, 2019|Categories: Our Community, Uncategorized|

Meet Midwest Region Parent Ambassadors, Kathy and Bob Dodd! This #MemberMonday meet Midwest Parent Ambassadors, Kathy and Bob Dodd! Bob and Kathy live in a suburb of Chicago with their 2 daughters, Cameron and Stacy. Stacy, now age 20, had her first seizure in January 1999 and was diagnosed with Dravet Syndrome in August [...]

Is Targeting of Compensatory Ion Channel Gene Expression a Viable Therapeutic Strategy for Dravet Syndrome?

By |2019-06-10T13:15:04-05:00June 8th, 2019|Categories: DSF Research Review|Tags: , |

In response to a disease-causing genetic mutation, the expression of any of the other normal genes might be up-regulated or down-regulated. This can be surveyed and measured. But is each response good or bad? Is the response trying to compensate, and restore normal function - or is it an unavoidable repercussion of the disease, [...]

An Old Drug for a New Indication: Repurposing Fenfluramine From an Anorexigen to an Antiepileptic Drug

By |2019-06-10T12:57:02-05:00June 7th, 2019|Categories: DSF Research Review|Tags: , |

New treatments can arrive along a variety of pathways, and this review article describes an example of using a known drug in a new way - in this case, the trail by which fenfluramine became a drug candidate for Dravet Syndrome. Fenfluramine was found to accelerate weight loss in the 1960's, and was approved [...]

Potentiating α2 subunit containing perisomatic GABAA receptors protects against seizures in a mouse model of Dravet syndrome

By |2019-06-10T12:53:23-05:00June 7th, 2019|Categories: DSF Research Review|Tags: , , |

Many of the drugs used to treat Dravet Syndrome work by interacting with GABAA receptors.  Each GABAA receptor is composed of subunits, and there are different versions of receptors depending on which subunits they have. Drugs have unwanted side-effects, and it is worth asking: if we hit just one specific kind of GABAA receptor, [...]

That Age Was So Hard

By |2020-04-06T16:16:18-05:00June 7th, 2019|Categories: Decoding Dravet Blog|

This week's guest blog post comes from Wendy Fry. She is mom to Penny, 4, who is living with Dravet syndrome. Penny experienced her first seizure at 8 months. After Penny's diagnosis, Wendy began fundraising and looking for ways she could help Penny and others with Dravet syndrome. Wendy joined #teamDSF in March 2018 as [...]


By |2019-05-17T13:12:57-05:00June 3rd, 2019|Categories: Our Community, Uncategorized|

Meet Mountain Region Parent Ambassador, Lynne Howard! This #MemberMonday meet Mountain Region Parent Ambassador: Lynne Howard! Lynne lives in the North Texas area with her husband Elliot, and two daughters Elina and Elissa.  Elissa is their youngest daughter,  diagnosed with Dravet Syndrome in 2012 after genetic testing confirmed SCN1A gene mutation. After taking time off [...]

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