Raising a Teenager with Dravet Syndrome

By |2019-06-26T14:28:07-05:00June 28th, 2019|Categories: Decoding Dravet Blog|

"If it were not for this tiny little genetic mutation, would she be a softball player, a dancer, or a musician? Would she be a good student?" - Shannon Cloud, DSF Parent Ambassador This week's guest blog post comes from DSF Southeast Parent Ambassador Shannon Cloud. Shannon lives in Smyrna, GA (in the [...]

#MemberMonday

By |2019-06-24T09:55:32-05:00June 24th, 2019|Categories: Uncategorized|

Meet West Coast Parent Ambassador, Karen Masters Foster! This #MemberMonday meet West Coast Parent Ambassador, Karen Masters Foster! Karen lives in Northridge, CA with her husband Jermaine and their 4 children, Audrey, Miles, Clover and Scarlet. Miles was 2 yrs old when genetic testing revealed he had an SCN1A mutation. Though initially diagnosed with [...]

#MemberMonday

By |2019-05-17T13:40:17-05:00June 17th, 2019|Categories: Our Community, Uncategorized|

Meet Southeast Region Parent Ambassador, Kimberly Brorson! This #MemberMonday meet Southeast Parent Ambassador, Kimberly Brorson! Kimberly resides in Fredericksburg, VA with her husband Bendik, Dravet child Lucy, Amelia and twin girls Madeline and Elise. Post Dravet diagnosis for Lucy, Kimberly took leave as a commercial pilot to be a full time care taker for [...]

June is Awareness Month

By |2019-06-18T14:00:51-05:00June 15th, 2019|Categories: Events|

Dravet Awareness Month YOU ASKED AND WE LISTENED! DSF is offering a lot of great opportunities for education, advocacy, and support. We're also expanding our support to the entire community, beyond just our support groups. Every Friday from through June 28, we will feature guest blogs by parents sharing their family’s journey with [...]

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 [...]

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 [...]

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 [...]