Meet Daliyah

By |2021-05-17T13:03:54-05:00May 17th, 2021|Categories: Dravet Stories|

About Daliyah We are from Maine. We love to go for rides together as a family and we sing a lot of nursery rhymes a long the way. Our daughter really enjoys when we play learning songs to join in together. When did Daliyah's seizures begin? She had very long seizures and some were polymorphic, [...]

Meet Hadley

By |2021-05-17T13:06:17-05:00May 17th, 2021|Categories: Dravet Stories|

About Hadley Hadley is part of a small family from South-Central Kentucky. In the summer months, you can find them out on the lake in their boat or in the woods on their side-by-side. Swimming and fishing are some of their favorite things to do! When did Hadley's seizures begin? Hadley's seizures began at 4 [...]

Meet Logan

By |2021-05-17T12:53:56-05:00May 17th, 2021|Categories: Dravet Stories|

About Logan Hello! Logan is the oldest son of a busy family with three little boys, two dogs, a ferret and 5 chickens. They moved from California to Florida and have been living in Tampa for the last 5 years! We love to travel and go on adventures as a family. They do our best [...]

Meet Jane

By |2021-05-17T12:22:42-05:00May 17th, 2021|Categories: Dravet Stories|

About Jane Jane lives in Tulsa, Oklahoma and love music and going to the lake. She loves books and dancing and hugging everyone! When did Jane's seizures begin? 5 1/2 months was her first seizure. We were told it was probably a one time thing but then it happened again… and again… and again. We [...]

Meet Jake

By |2021-05-17T12:23:23-05:00May 17th, 2021|Categories: Dravet Stories|

About Jake Jake lives near Boston with his mom and dad. He has an older brother who lives and works in Boston. Jake is 25 years old and is in a home based program. He loves to be outside and loves visits from family and friends. When did Jake's seizures begin? Seizures began at 7 [...]

June is Awareness Month

By |2021-06-09T12:40:47-05:00May 17th, 2021|Categories: Events|

#fightdravet June is Dravet Syndrome Awareness month and June 23rd is International Dravet Syndrome Awareness Day. This year, we are recognizing those that we have lost on our first annual Remembrance Day, June 15th. By raising awareness of Dravet syndrome, our community can increase knowledge in the general public; improve early diagnosis; assure [...]

New Board Member

By |2021-05-17T14:52:47-05:00May 17th, 2021|Categories: Our Community|

Welcome Our New Board Member Welcome to Our New Board Member! Please join us in welcoming our newest board member, Ross Nicholas, who officially began his term on April 15, 2021. Ross lives in Atlanta, GA with his wife Polly and their three children Millie, Finn, and Henry – who has Dravet syndrome. [...]

Virtual Conference

By |2021-05-17T18:56:35-05:00May 17th, 2021|Categories: DSF Programs|

2021 DSF Family & Professional Virtual Conference Learn the latest from top experts in Dravet syndrome! Here is your opportunity to hear the latest on new treatments and research in the field of Dravet syndrome on June 24th-26th - in your home and on your schedule. Join us live to participate in Q&A sessions with [...]

Fintepla Global Access

By |2021-05-17T14:53:08-05:00May 17th, 2021|Categories: Research / Treatments|

Global Access Program for FINTEPLA® (Fenfluramine) Oral Solution Zogenix Launches Global Access Program for FINTEPLA® (Fenfluramine) Oral Solution Zogenix is committed to providing access to and supporting the safe and appropriate use of FINTEPLA (fenfluramine) in countries where it is not yet approved. As an important first step, they have started the “Zogenix [...]

Remembrance Day

By |2021-05-17T19:03:55-05:00May 17th, 2021|Categories: Events|

Dravet Remembrance Day Beginning in 2021, each year DSF will recognize June 15th as Dravet Remembrance Day to allow us to remember all of those who we have lost to this disease. Bereaved families are invited to share the names of their deceased loved ones who have passed away as a result of [...]

Go to Top