Nayzilam Nasal Spray

By |2019-06-13T16:56:59-05:00June 15th, 2019|Categories: Research / Treatments|

FDA approves Nayzilam Nasal Spray The FDA has approved Nayzilam(®)(midazolam) Nasal Spray for the acute treatment of intermittent, stereotypic episodes of frequent seizure activity (i.e. seizure clusters, acute repetitive seizures). The nasal spray is designed as a single-use treatment for patients 12 years and older. It can be carried with a patient and [...]

Researcher Spotlight

By |2019-06-13T16:58:26-05:00June 15th, 2019|Categories: Our Community|

Danielle Andrade, MD, MSc, FRCPC Please welcome our newest Medical Advisory Board (MAB) member, Danielle Andrade, MD. Dr. Andrade has devoted her time and medical expertise to improving the lives of those afflicted with Dravet syndrome and associated epilepsies. As a MAB member, she offers input on clinical trials that impact the Dravet [...]

Caregiver Connect

By |2019-06-13T21:25:33-05:00June 15th, 2019|Categories: DSF Programs|

Caregiver Connect Launch DSF is pleased to announce Caregiver Connect – a new multi-year collaboration between DSF and Greenwich Biosciences for caregivers and families. Caregiver Connect is a unique multi-faceted program with a focus on helping families manage the caregiver burden and stress that accompanies caring for a child with a rare epilepsy [...]

Stoke BUTTERFLY Study

By |2019-06-13T21:22:27-05:00June 15th, 2019|Categories: Research / Treatments|

Stoke BUTTERFLY Study The BUTTERFLY Study, conducted by Stoke Therapeutics, is collecting information about the mental development, behavior, movement, communication skills, seizure frequency, and sleep pattern of young people with Dravet syndrome. The BUTTERFLY Study is an observational study, which means that no investigational medications or other treatments will be provided. Participants will [...]

The Battle-Heavy Years

By |2019-06-03T11:31:26-05:00June 14th, 2019|Categories: Decoding Dravet Blog|

This week's guest blog post comes from DSF Parent Ambassador Morgan Turpin. Morgan is a full-time genetic scientist, a mother of two, a part-time writer, a parent ambassador for Dravet Syndrome Foundation, and an avid researcher and advocate for her son.  She aims to spread awareness about Dravet syndrome and the difficulties of parenting [...]

#MemberMonday

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, [...]

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, [...]

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 [...]

That Age Was So Hard

By |2019-05-30T10:37:49-05:00June 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 [...]